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Panelists of Initiating End-of-Life Care Conversations and GHDonline staff

Initiating End-of-Life Care Conversations

Posted: 05 Oct, 2015   Recommendations: 16   Replies: 65

End-of-life care is the term used to describe the support and medical care given during the time surrounding death. The care provided does not happen just in the moments before breathing finally stops and a heart ceases to beat. Rather, an individual may be living, and dying, with one or more chronic illnesses and require care for days, weeks, and sometimes even months. Personal preference, family, culture, faith, and economics all intersect in this journey.

There are many discrepancies between individual’s wishes and their actual end-of-life care outcomes; the majority of Americans die in institutional settings despite their wishes to die at home (American Psychological Association). This is just one indicator of the gap between patient’s goals and desires and the current state. This Expert Panel will focus on best practices in patient-centric end-of-life care.

We are pleased to welcome the following group of Expert Panelists to discuss end-of-life care conversations:

• Rachelle E. Bernacki, MD, MS, Associate Director, Serious Illness Care Program, Ariadne Labs; Director of Quality Initiatives, Division of Adult Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Brigham and Women’s Hospital
• Nathan Kottkamp, MA, JD, Founder and Chair of National Healthcare Decisions Day; Partner, McGuireWoods LLP
• Christian Ntizimira, MD, Medical Officer; Advocate of Pain Control Access; Palliative Care Expert and Educator; Pain Policy Consultant; Member Founder of Rwanda Palliative Care and Hospice Organization (RPCHO); Scientific Advisory Committee of Harvard Global Equity Initiative (HGEI)
• Lisa Kennedy Sheldon, PhD, APRN-BC, AOCNP, Associate Professor, College of Nursing and Health Sciences, University of Massachusetts Boston; Editor, Clinical Journal of Oncology Nursing, Oncology Nurse Practitioner, St. Joseph Hospital; Associate Member, Cancer Risk and Disparities, Dana-Farber/Harvard Cancer Center

Our panelists will offer insight into the following questions:

1. What are the best practices for determining and understanding the patient's goals of care? What is the provider’s role?
2. How do you have end-of-life conversations in different care settings, and with different populations? How do you ensure cultural competency and consider health literacy skills when discussing end-of-life care?
3. What role, if any, should cost have in determining appropriate end-of-life care? How should providers broach this topic with patients?
4. What tools can be used to help patients have end-of-life conversations with both their loved ones and providers?
5. How do you generate demand in this area among target populations? What are ways to empower providers and patients to have these conversations, and what does success look like?

This panel is part of our US Communities Initiative, which is supported by the Agency for Healthcare Research and Quality (AHRQ), and aims to foster discussions between health care professionals on evidence-based practices, and translating these practices across disparate settings, to improve health care delivery in underserved populations in the US.

In an effort to understand the impact of our Expert Panels, we’ve created a short (4 question) survey. Your responses are greatly appreciated—please take the survey before the discussion begins: https://www.surveymonkey.com/r/NJLFHCY

We look forward to a rich discussion next week – please join the conversation and share your questions or comments!

Replies

 

Isabelle Celentano Replied at 11:55 AM, 5 Oct 2015

In preparation for next week's discussion, I wanted to share a resource that might be of interest. We encourage you to share additional resources on this important topic, as well as any questions you'd like to see our panel address next week. Looking forward to a great discussion!

Attached resources:

Jean Galiana Replied at 12:41 PM, 5 Oct 2015

Hello,
I recently attended a symposium with Dr. Atul Gawande as the main presenter.
He mentioned a study he is conducting wherein 1/2 of the doctors in his practice are randomly chosen to receive training in end of live and palliative care counseling. The other half do not receive the training. Those who received training will have discussions regarding the repercussions/side effects/risks of the possible treatment plan and seek to learn the patient's priorities in his or her last phase of life.
He hinted that the findings will be interesting. The first phase results will be announced soon from what I understand.
His book, Being Mortal: Medicine and What Matters in the End (http://atulgawande.com/book/being-mortal/) is compelling and has opened a global discussion on just this subject.

Marie Connelly Replied at 6:18 PM, 5 Oct 2015

Many thanks for sharing this resource, Jean—Being Mortal has certainly started a much needed global discussion on the issues we hope to explore in more detail during this Expert Panel next week.

I did want to clarify for everyone that while we are hosting this event as part of our US Communities Initiative, we do hope to learn from our colleagues working around the world on how they are initiating these important conversations with patients (and their families) in their settings. We look forward to hearing your perspectives and questions for our panelists in the coming days, and hope everyone will continue to share valuable resources here as we prepare for the discussion next week!

Lauren Magoun Replied at 12:13 PM, 6 Oct 2015

The following toolkit for the general population and white paper for healthcare organizations would be valuable additional resources.

The toolkit from The Conversation Project (targeted to the general population encouraging and helping them share their end of life wishes with families/loved ones):
http://theconversationproject.org/starter-kit/get-set/

IHI White Paper on how healthcare institutions can be ready to receive / use information from patients:
http://www.ihi.org/resources/Pages/IHIWhitePapers/ConversationReadyEndofLifeC...
"In 2012, The Conversation Project, in collaboration with the Institute for Healthcare Improvement, launched a public campaign to encourage people to "have the conversation" about their wishes for end-of-life care with loved ones, with the aim that everyone’s wishes are expressed and respected. As the campaign grew, it became clear that health care organizations would need to be “ready” — that is, to have systems in place to receive patients’ wishes, to record them in the health record, and to respect them by providing care aligned with patients’ stated wishes.

Thus, IHI’s “Conversation Ready” work began in 2012 with the aim of developing reliable processes for health care organizations to engage patients in conversations about their wishes for end-of-life care, steward that information, and then respect those wishes at the appropriate time.

Based on this work, IHI developed a detailed framework built on five core principles to help organizations begin the process of becoming Conversation Ready. This white paper describes the Conversation Ready framework, the changes associated with the framework’s five principles that can be implemented to improve end-of-life care, examples of changes tested by organizations, and suggested measures to guide improvement."

Mulbah Tokpah Replied at 5:15 PM, 6 Oct 2015

Hi Dr.
Thanks for bringing this topic on board for discussion.For most Liberians, end of life care is delivery as if we were sure that the individual involve will recover from his/her illness. In most instances, it is the hospital that pronounce that this person will surely die despite the best of care that may be given this person. After this pronouncement has been made by the hospital authority, relatives of sick individual will decide to take their sick person to the country doctor believing that all will be well with their relative despite the medical advice. It is in this process that relatives may use this time to consult with ancestor' spirits to provide healing for this person. While the consultation is on course, the sick person will continue to receive the best possible care from the hands of relatives who may choose to ignore preventive measures despite the diagnoses of their sick person. End- of- life care may include: bathing the individual three times daily with use of country perfumes, delicious meals as requested by the sick person,, change of linen, fencing the individual continuously with the country fan, etc. End - of- life- care can be more sophisticating if the individual involved is an elder or chief with in the family. In this manner all family members and relatives must pay their daily respect to this person. It can also be a time of entertainment for this elder or chief relatives and those country doctors who are treating this sick person. A number of cattle like four sheep, four goats, 15 chicken and hunted animals are butchered and cooked on a daily basis. This may go on for a long period of time until the sick person finally give off the ghost.
End- of life- care is unique to each group of people and their setting and can involve many cultural practices even after the death of the sick person.

Mulbah M. Tokpah

Mieke Visser Replied at 9:59 AM, 7 Oct 2015

Apart from barriers to communication with patients, there are also physician-related barriers towards communication and patient and family-centered decision making at the end of life.
We published a systematic review in the open access journal Critical Care about these barriers. I have added the article as attachment. Although the described barriers are ICU physician related they might be applicable to other physicians as well.

Mieke Visser

Attached resource:

A/Prof. Terry HANNAN Replied at 11:08 AM, 7 Oct 2015

Mieke, thank you for this and I will read it today. In fact I was considering raising this point just as your posting came into my mail box. Having previously been involved in Palliative Care for 12 years and now 40+ years as a "General Internist" I often try and guide my teams (undergraduate and post-graduate) in the care of the dying patient and communication with these patients by asking them "Who has the greatest problem when it comes to discussing death (not 'passing away') when dealing with a terminally ill patient?" For most of us it is the doctor / clinician. We can only be at ease with 'dying' when we begin to address where we as care deliverers recognise our own limitations and understanding of death and loss.
At a professional and personal level I found Viktor Frankl's Mans Search for Meaning and the Doctor and the Soul an invaluable resource for the self-understanding of life. death, dying, love and work.

Elizabeth Glaser Replied at 12:20 PM, 7 Oct 2015

Dear Mulbah,
Thank you for describing your approach to end of life care in Liberia. It emphasizes that we have to be sensitive of the context and culture of the dying person and his/her family.

When I was in Liberia, I learned that it was quite difficult for doctors or health care facilities to obtain and administer morphine to treat pain in terminal patients, including those dying of Ebola. While traditional practices do provide comfort to the dying , does palliative care in your country ever include use of morphine or other drugs o ease pain, anxiety, and discomfort?


Elizabeth

Kurt Figueroa Replied at 12:28 PM, 7 Oct 2015

This is a very interesting topic, in Mexico City and in the whole Republic
we have acces to a sub specialization in Paliative Care/End of Life
Care, first is needed for the Medic to finish or be in anesthesiology,
internal medicine or emergency residency program, and then there is the
sub, the thing is that most of those sub specialists stay i the big cities,
and of course there is a lot of need in rural areas, and we have many, and
there is no ICU units there, only Primary Care, thje big cities are far, 2
or 3 hours Sierra Roads, so it is complicated and dangerous to get to the
ICU units.

As i was doing my Social Service in Medicine i had to attend various
situations of End Of Life Care, fortunately i had the advice of a very good
team of Medical Professional, both General Practitioners and Internal
Medicine specialists to advise me, because it is no only pain control or
simptomatic control, but also familiar talks, explanations, time that is
invested in the whole picture.

So it is a very necesary topic, i will be more than glad to participate
further.

Regards to everybody.

Kurt.

2015-10-07 10:17 GMT-05:00 A/Prof. Terry HANNAN via GHDonline <
>:

Monique Germain Replied at 4:36 PM, 7 Oct 2015

Thank you.
I am curious to find out how end-of-life care is interpreted and managed from different cultural perspectives. I have had some personal encouters with friends going through this period and Ithe responses were quite different. I will benefit from this discussion.
MG

Monique Germain Replied at 5:01 PM, 7 Oct 2015

Elizabeth:
I serve a Haitian American community in Chicago and I have been involved in helping families dealing with their loved ones and share their end-of life wishes or the absence of them. Because of cultural preferences, I find it difficult to engage families in discussing these issues. Yet, it is so important to address.
MG

Paul Nelson Replied at 11:08 AM, 8 Oct 2015

The most basic attribute of HEALTH for a person is the capability to love and and to be loved, a love devoid of possessiveness or control. It is sustained by the fundamental character of "caring relationships," beginning at birth and ending at death. For me, the fundamental definition of a "care relationship" is: A variably asymmetric interaction between two persons, occurring over an extended period of time, who share an underlying commitment to enhance each others' AUTONOMY and to communicate with EMPATHY, HONESTY, NON-CRITICAL ACCEPTANCE and WARMTH. The greatest gift to a person is to be surrounded by persons who share "caring relationships" at the time of birth and death. The underlying level of a person's AUTONOMY is vastly different at the beginning and end of life but oddly similar, given the unknowns that we all share about individualism and eternity. The key for healthcare is linked to honesty as a basis for building trust. It is likely that a person at the end of life is most afraid of being in pain and of being a burden to others. The value of the hospice ideal is to ensure that a person's extended family are continuously coached to manage pain and to share the duties of attending to a person's basic needs: safety, personal hygiene, acceptable nutrition and a surrounding cultural presence. In this sense, the hospice ideal is universal as are the "caring relationships" that bring great dignity and honor to all involved. Finally, it is driven by the capability to love and to be loved that begins at birth and sustains our ability to sustain 'caring relationships' throughout life, especially at its end.

At this time in history, how can we build the institutional basis for every person's community to ensure that each person ends their life with dignity and that each child begins their life knowing they are capable of being loved? The halo effect of hospice is profound, one person at a time, community by community.

dian marandola Replied at 12:52 PM, 8 Oct 2015

Great discussion. I am a former oncology and hospice nurse. These nursing roles have afforded me an ease to talk about death and dying with professionals, families and my friends & family.

I am quick to see how many words people can use rather than "die" or "death".

However, in religious context people pass....they don't die as much as pass to a spiritual place, into a spiritual being, or into eternal life.

Thoughts?

Thank you. Dian Traisci-Marandola

Neda Talebzadeh Replied at 2:47 PM, 8 Oct 2015

Hi Panel!
Thank you for having this discussion and bringing awareness to this topic. It is something that has crossed my mind from time to time.

I am an MBA student at BU studying leadership and entrepreneurship, and I have recently come across a startup called CAKE, www.joincake.com. I am considering working for their team as an intern. So, my question to the panel is, what do you think about the idea of giving individuals the option to consider end of life options through an online platform? This would ask the person questions to start the conversation for themselves, and the decisions would be saved online and can be provided to family, lawyers, financial advisors, etc. CAKE also provides resources end of life questions that may take more time and thought.

What would be the thoughts of the experts here? Maybe some pros and cons to such a platform? Would you recommend such a service to people you know?

Neda

Isabelle Celentano Replied at 4:48 PM, 8 Oct 2015

Many thanks to all who have started discussing this very important topic. Along with the additional resources shared by others, I would like to include another from Moderator Terry Hannan. Please find "End of life stories" attached.

Attached resource:

Luis Azpurua Replied at 9:17 AM, 9 Oct 2015

In our Hospital (Venezuela) we have found that "third age patients" (> 90 yrs) go into ICU, stay there for many days and then go to the ward where they die. We are asking why is this happening and are we prolonging an agony? One of the reasons that this is happening, as Prof. Hannan stated, is that the doctors are not used to have end of live conversations with their patients and their families. Talk about end of life is like a taboo.

We are on our way to educate our medical staff and then to educate our patients about this topic. This is why this discussion is very important for us.

Elizabeth Glaser Replied at 11:28 AM, 9 Oct 2015

Luis,
Please consider including your nursing staff so physicians and nurses can collaborate on this. Sometimes it is hard for the patient or families to speak freely with the physician at first because they do not wish to "disappoint" the doctor by "giving up". The physician may also feel that bringing up the subject is a form of giving up, especially if the doctor has cared for the person for many years.

As a nurse, I was not an authority figure in the same way as the physician, which sometimes allowed the person to say more about how they felt, their fears, and what decisions that they wanted to make. We mostly brought up end of life care in an outpatient setting, as my work at that time was at a clinic that did mostly HIV care with some oncology care, too.
The doctor and I would plan to meet with the patient but I would go in first to take vital signs, see how the person was feeling, and ask about their goals for treatment moving forwards . I would say that the doctor was also interested in being a part of the conversation, and ask if it was okay if we talked with the MD , too. The doctor would come in after 10 minutes or so , after we had begun the conversation, I would then bring him/her up to date, and we would move forward together.

In many cases, at least with young people with end stage AIDS, they knew that they were dying and that there were no more options, but they felt like they had to keep fighting because that was what was expected of them. They were very attached to their physicians as they felt that they owed their lives to them ( many patients had been in our clinic since before HAART) and reported that they did not want to upset the doctor by talking about dying. Some people had been afraid of being a burden on relatives or worried about who would care for a loved one, or even who would take their pet , and I could reassure them by answering their questions, getting them connected to services, setting up the hospice referral and orders and keeping in close touch with the patient and their hospice caregivers on a daily basis through to death. In many cases , relatives and partners would visit us after their loved one had died to grieve with us and to say a final goodbye.

I realize that this process is somewhat different when it is taking place on an inpatient unit where staff may not have the same long term relationships with patients and family, but working as a team with medicine, nursing, social work, and pastoral care, the same goals can be achieved: that a person dies in comfort and with dignity.


Elizabeth

Isabelle Celentano Replied at 3:15 PM, 9 Oct 2015

Just a quick reminder that our short pre-panel survey is open until Monday morning. Your responses to these 4 questions will help us evaluate the impact of these types of discussions and provide us with incredibly helpful feedback. Please take a moment to fill out the survey if you haven't already: https://www.surveymonkey.com/r/NJLFHCY

Nathan Kottkamp Panelist Replied at 10:01 AM, 12 Oct 2015

I'm the Founder and Chair of National Healthcare Decisions Day (April 16)(www.nhdd.org), which I founded because of the fact that most of the ethics consults in which I've participated in had to do with lack of advance care planning. The single biggest lesson: we don't address advance care planning until it is too late--indeed, more often than not, the discussions occur at a point that there is nothing "advance" about it. The solution to this is incorporate advance care planning into routine care and into people's ordinary (non-healthcare) lives.

Nathan Kottkamp

Attached resource:

Lisa Kennedy Sheldon Panelist Replied at 12:17 PM, 12 Oct 2015

Thank you for the opportunity to participate in this important discussion on conversations at the end-of-life on GHDonline. As an Associate professor at the University of Massachusetts Boston (UMass Boston), researcher, oncology nurse practitioner and author, I have spent the better part of my career trying to determine the best practices for communication between healthcare providers, and patients and their families. There is probably no more crucial time for these communication skills than during conversations about preferences, values and beliefs to guide care. While we have increased our technology and treatments to diagnose and treat life-limiting illnesses, we have not proportionately increased our skills to assess, support, and activate patient preferences at the end-of-life. We also do not have a cure for aging which will happen to all of us and end with its natural conclusion.

Let's be clear as we start this discussion that we are not necessarily talking about just one conversation, but rather a series of open discussions that should begin before critical moments when the stakes are high and the emotional burden for the patient and family may be too intense. One of the resources for this discussion, The Conversation Project, http://theconversationproject.org/starter-kit/intro/, from the Institute for Healthcare Improvement, provides valuable tools for people facing life-limiting illnesses and their family members to begin these important discussions. It also has valuable resources for completing Advance Directives and communication strategies that patients can use to share this information with their doctors and other healthcare providers.

Healthcare providers also have a responsibility to guide patients and families to begin these discussions in advance of critical times. We also have an ethical responsibility to care for our patients at vulnerable points where they may be facing their mortality. If we have done our job well, we already know what our patients value because the patient and family have had these discussions and we have documents to guide our care in keeping with their preferences. OncoTalk (http://depts.washington.edu/oncotalk/) was developed by Dr. Anthony Back and colleagues, to help oncologists improve communication skills especially around difficult conversations.

What other training programs are available to doctors and other healthcare providers to enhance their communication skills about end-of-life preferences?

Nathan Kottkamp Panelist Replied at 3:32 PM, 12 Oct 2015

Lisa,
Great call about noting that this is not a one-time conversation. We're talking about a process. Of course, National Healthcare Decisions Day is only a single day, but it is really meant to be the beginning of the process, not the entire thing. Even those who have engaged in advance care planning and documented it need to revisit their decisions and their paperwork to ensure they remain current.
Nathan

Dr. Ntizimira R. Christian Panelist Replied at 5:22 PM, 12 Oct 2015

Thank you Isabelle to give us this opportunity to talk about End-of-Life care conversation and Thank you also to the participants who shared experiences about the topic.

I'm Dr. Christian Ntizimira, Palliative Care Physician and Pain Policy Advocate from Rwanda. I live in Rwanda, a small landlocked country in Central East Africa with an estimated population of 11, 038,000. The country has deeply been affected by the1994 Genocide of Tutsi, which took lives of more than 1,000,000 people in 100 days and made another 2,000,000 refugees. I think we lost a part of humanity during the dark history but I believe, the context of Palliative Care will contribute to bring back this part of humanity lost.

After the genocide in Rwanda in 1994, I have seen a lot of unnecessary pain and suffering. This experience motivated me to devote my career to preventing and relieving the unnecessary suffering of all Rwandans. At the end of my high school education, I pursued medicine out of my deep respect for the noble goals of the medical profession. I yearned to serve my neighbours and country by helping them gain access to the quality medical care they deserve.

I achieved good grades throughout my university education, and I was deployed by the Rwanda Ministry of Health to the biggest District Hospital in Rwanda. During this time I worked out of both in Surgery Department and the head of Emergency department, where I was responsible for the daily care of at least 20 critical patients, most of whom suffered from most traumatic accident and devastating infectious diseases: HIV, tuberculosis and malaria. In my childhood, and throughout my medical training, I dreamt of being the best surgeon one could be. That was until the day I met a young man of 24, dying of liver cancer and suffering from unimaginable pain. When I first learned about palliative care in 2008, I knew this was the way to fulfill my “calling”; Worse than the pain he was enduring was the fact that I, a trained medical doctor, could not relieve his suffering because of regulatory and cultural barriers in Rwanda that prevent access to morphine, an essential pain medication. To prescribe one dose of morphine, the protocol required signatures in red ink from 3 different department heads. Witnessing that young man's death, in pain and without dignity, I vowed to make alleviating suffering in patients with life-threatening illness my life's work. Inspired by this sad story, which was the turning point of my professional career and drove me to understand the gaps between Health professional attitudes and Patients expectation.

In the Rwandan context, the cultural impact is important and I have learned to work with respect to the culture, while combining modern management principles to improve the quality of life of my patients.

The End-of-life care's context in relation to patient autonomy is best described in the saying, “When you are well you belong to yourself, but when you are sick you belong to your family.” As long as someone is well, they have the autonomy to make their own decisions, their own plan and decide about their own future. However, as soon as that person becomes sick, especially with a chronic disease, even if they are still able to make some decisions, it’s automatically the family’s decision that orients the patient management of care.

I think the best way to understand the patient's goals of care is to understand their history, not only their stories. The end-of-life care conversation is still a taboo in many cultures and countries but still there is hope to visualize the patient not as a unique component but an important cornerstone where his society or community revolve around like satellite doing around the earth.

From my small experiences, I understood that the goal of provider is to listener and understand what is the most important sense of humanity our patient value and try to use appropriate terminology with respect of his perception of life to conciliate to the rest of his/her days. The rest should be an extraordinary collaborative between patient, family and provider.

PS: Please see the link below about the context of management in Rwanda Post-Genocide Society.

Christian

Attached resource:

Amungwa Athanasius Nche Replied at 1:57 AM, 13 Oct 2015

My name is AMUNGWA ATHANASIUS NCHE am I am a retired nurse and have been
doing nursing in various capacities including being the President of the
national Association of Nurses, Midwives and Health technicians for eight
years. You have talked of advance planning and we call this in nursing the
nursing care planning process. Unfortunately there is absolutely no
hospital or health institution that has incorporated the nursing care
planning process in their care system and doing it appropriately which is
why care is not standardized at the expense of the patients or clients
rights and ethics.
The other hard fact in my country Cameroon is that the association of which
council I ran for eight years is a toothless bulldog as far as overseeing
the ethics that governs the patients life in the health institution is
concerned and their rights are trampled upon since our association does not
have autonomy over its nurses, midwives and health practitioners, they
can't withdraw their licence, they cant discipline them and I think this is
not good for a heath system like ours. We keep fighting to have our
autonomy but the Government is not willing to give us and hangs on to the
recruitment, training, deployment and supervision of these personnel in an
atmosphere fraught with corruption and laissez- faire. I think we also need
a day like the one you have within a Governance that listens to its
stakeholders to put things right. There is the international nurses day
which we celebrate but Government never puts the recommendations into
practice and unfortunately Cameroon is no yet a member of the ICN, neither
the ICM which might have been more helpful to us. The reason is that some
of the nursing leaders are more power hungry and corrupt than seeing a way
forward for the association. So the fight goes on between the good and the
bad of the association to march forward in a straight and orderly away
including wining the fight for autonomy and taking the lead in applying the
ethics that govern practice for the benefit of those cared for.

*Amungwa Athanasius Nche*
*Public Health Consultant with the CBC Health Services*
MPH(Manchester Metropolitan University), PHP.PH (TAU-ongoing)
*P.O. Box 2157*
*Alakuma, Road-Mankon*
*Bamenda*
*North West Region *
*Cameroon*

Skype Address: nchemuwuffimanyonga


"





"If a friend of yours does not give you a smile, give him one of yours"
Annon

Lisa Kennedy Sheldon Panelist Replied at 8:17 AM, 13 Oct 2015

Thank you, Christian, for this moving and thoughtful piece on the added dimension of personal trauma as it impacts choices and the creation of meaning at the end-of-life. This GHDonline discussion is intended to bring international and historical perspectives to improve our understanding of end-of-life care. Your discussion reminds us of how a patient creates a story of their time on earth and often struggles to find meaning and peace. As healthcare providers, we can "remove the white coat" and become humans sharing in the creation of these important stories. Truly an honor to be included in these discussions, isn't it?

Your quote about the role of the family - “When you are well you belong to yourself, but when you are sick you belong to your family” - captures a universal human experience. This is why it is essential that families begin having these discussions over time and not just one conversation about/with one patient at one critical juncture with one doctor.

Lisa Kennedy Sheldon Panelist Replied at 8:34 AM, 13 Oct 2015

Thank you, Amungwa, for your comments on the important role of nurses in these conversations.

As we know, nursing is the largest healthcare workforce in the world and nurses spend the most time with patients of any healthcare provider. Sometimes, perhaps in the dark, quiet of the night shift, there are spontaneous conversations where patients share sensitive, powerful stories with nurses. I remember my fist conversation during just one of these occasions as a new nurse. My training and education in these conversations was limited and, lacking confidence in my abilities to respond appropriately, I sat and listened to my patient, and hoped I provided some measure comfort and reassurance by "being present", by holding her hand.

We need to increase nurse training in these conversations, recognize the contributions of nurses to end-of-life care conversations, and acknowledge the therapeutic benefit of nurses and other healthcare providers listening to patients as they create the stories of their lives.

A/Prof. Terry HANNAN Replied at 8:51 AM, 13 Oct 2015

This whole discussion has been outstanding and there is much joy in the "presence of humanity" in the postings. To Lisa one of the important lessons I learnt as a Palliative Care physician of 12 years is related to the point you raise of "being there". Sometimes there are no words but it is the "presence" of another that makes the journey easier.
Humans hate being "alone" [in general] and probably the hardest thing we as a race have to do is "let go".
In writing this response to these postings I am reminded of an interesting observation while working in a Catholic institution. I observed and shared with others that I can only recall 2 patients talking about "where they were going" [life after death] yet all talked about 'what they were leaving behind".
I had Goosebumps when reading of the isolated young Rwandan woman with breast cancer-wow!

Linda Swallow Replied at 10:16 AM, 13 Oct 2015

I'm an in-patient palliative care nurse practitioner in an urban community hospital in Baltimore. Most of what I do is related to end-of-life care and helping families and patients access hospice services. In general, I find that patients and families are reluctant/resistant to having discussions regarding advance directives because "it isn't time yet", even though the pt has an obviously terminal disease or multiple co-morbid conditions. I heard a palliative care web cast in which the speaker stated that "People have an abiding desire not to be dead!" While I would like to be having advanced care planning discussions with patients much earlier, I would really like to be getting patients into hospice care earlier, so that they and their families can derive more benefit from hospice than the last 2 hours to 2 days to 2 weeks of life. I know that what I do makes a difference in the lives of my patients/families, but I get frustrated that they don't get as much care as I know is available.

I worked in Addis Ababa, Ethiopia for 5 yrs (until a couple yrs ago) with an HIV/AIDS home based care project. While the majority of our beneficiaries were doing well, there were always a few who were more terminal. It was a very delicate balancing act to be honest about what was happening medically and yet not take away hope. And because I had to work with a translator, I'm sure that not everything I hoped to convey was said. The mind set was that "she knows what is happening, we don't need to talk about it." I was fortunate to work with Hospice Ethiopia on a few occasions--it was the only way to get Morphine for patients--and that has only been made easier in the past 3-4 yrs. I was also able to take a "field trip" to Hospice Africa Uganda and see the wonderful work they are doing there. The post-genocide story was exceedingly touching--something that as Americans we almost don't have a category to understand--other than as being human. Thanks for having this discussion

Judith Thermidor Replied at 10:28 AM, 13 Oct 2015

Communication and decision making in these situations require a complex integration of relevant conceptual knowledge of ethical, culture, religion and economics implications, the principle of surrogate decision making, and legal considerations; and communication skills that address the highly charged emotional issues under discussion. I am practitionner in Mexico, it's really touchant facing every day hazard adventure by all bureaucracies for patient's family to get access at hospital to give comfort and support of the end of life. As a consequence, many people die in hospitals, alone and in pain.
Another comment is about the disparity in end-of-life care include lack of adequate pain care in minority patients and poor management of pain by healthcare practitioners. Also, other factor could be contributed to disparities include lack of knowledge about end-of-life care options, mistrust of the healthcare system, and poor communication between clinicians and patients. Even if the majority Mexican speak spanish, but also there is more than 69 dialects speaking by native Mexican, so language differences can lead to misunderstanding and misinformation that affect medical decision-making.
In Mexico, access to palliative care services and to medicines essential for pain treatment is very limited.
Judith

Nathan Kottkamp Panelist Replied at 10:39 AM, 13 Oct 2015

Linda,
Thanks. One of the great disservices that I think we do in providing care to patients is that we fail to tell them (and their families) when they are actually dying. We don't like to use the words, and the results are often heartbreaking. Advance care planning demands a certain level of bluntness.
Nathan

A/Prof. Terry HANNAN Replied at 10:42 AM, 13 Oct 2015

Linda, your comment's " In general, I find that patients and families are reluctant/resistant to having discussions regarding advance directives because "it isn't time yet", even though the pt has an obviously terminal disease or multiple co-morbid conditions. I heard a palliative care web cast in which the speaker stated that "People have an abiding desire not to be dead!" ", indicate to me through these statements that we have evolved "care" to the point that "dying and death" can be "beaten". This culture is making it so much harder for many to move across the boundaries of human "finiteness" and our understanding the meaning in both these terms.
As a physician I am of the belief that many of the difficulties here stem from the belief in "the many factors within the equation" [clinicians, press, culture, patients, families, etc.] that they have actually designed to avoid "inevitable dying and death".
So the "letting go" is problematic for the "therapist" and the "patient/client".
You wrote of the difficulties (as others have) of obtaining adequate pain relief and other resources in LMIC nations but I would also be interested in yours and others on the cultural aspects of dying in non-developed or developing nations.
I am posting this in the hope it adds validity to this vibrant discussion [which has evolved under the fantastic GHDonline e-umbrella]

Isabelle Celentano Replied at 5:01 PM, 13 Oct 2015

It’s great to see how many of you have had similar experiences in your respective roles and countries. For those coming into the discussion a little later, I just wanted to recap on some points raised these first two days of the panel.

Monday focused on best practices for determining and understanding the patient's goals of care at the end-of-life and the role of the provider. Many mentioned the need for physicians to overcome their own barriers to communicating with patients at the end-of-life. Some physicians may see raising questions about end-of-life care as a form of giving up, or too taboo of a subject to bring up early on. Nurses may be particularly well-suited to begin this conversation, as Elizabeth Glaser noted, since patients may be afraid of “disappointing” their physicians.

Providers should recognize that end-of-life care doesn’t involve a single, one-time conversation, but more a series of conversations that should happen throughout care. Although advanced care planning is a crucial part of this process and may seem like a one-time action, these plans should be revisited to ensure that they are up to date.

Panelist Christian Ntizimira shared his experience providing palliative care to those who survived the 1994 genocide in Rwanda. He raised the point that providers should understand not only the patient’s story, but also their history and personal trauma in order to give the best care at the end-of-life.

Tuesday’s discussion involved having end-of-life conversations in different care settings and with different populations. Building on Christian’s post, many agreed with his point regarding patient autonomy: “‘When you are well you belong to yourself, but when you are sick you belong to your family.’ As long as someone is well, they have the autonomy to make their own decisions, their own plan and decide about their own future. However, as soon as that person becomes sick, especially with a chronic disease, even if they are still able to make some decisions, it’s automatically the family’s decision that orients the patient management of care.”

Having these conversations with the patient and their family early and often is key. Linda Swallow noted that it is a balancing act between being honest with the patient’s prognosis in a way that they and their family can understand, yet not taking away hope.

Having these conversations with different populations can also bring about miscommunications due to language barriers, as mentioned by Judith Thermidor. The issue of access to pain medication was also raised. In low- and middle-income settings there are many regulatory and cultural barriers which prevent the use of morphine.

Tomorrow, we will discuss the delicate issue of cost of care at the end-of-life. What role, if any, should cost have in determining appropriate end-of-life care? How should providers broach this topic with patients?

Kevin Haselhorst Replied at 7:34 PM, 13 Oct 2015

As an ER Physician, money is no object when someone's life is in peril. The value of life cannot be measured in dollars and cents. Nevertheless, I had practical conversation with a patient regarding the cost of his end-of-life care. One day following his admission to the hospital for 10 days, he returned to the ER. He had terminal lung cancer and did not wish spend more days in the hospital. He was blunt about having great insurance,yet was very aware of his financial responsibility for 20% of the bill. He did not wish to deplete his savings on medical bills and leave his wife destitute. I was just as blunt in replying, "Yea, you don't want to be stupid about this predicament." The mere mention of him being at risk for being "stupid" was an awakening for him. He was ready to take matters into his own hands and that meant not spending money frivolously. His personal values were moved to the forefront of his mind. It gave him a sense of empowerment and self-worth that all the money in the world could never provide.

Nathan Kottkamp Panelist Replied at 8:04 AM, 14 Oct 2015

The issue of cost is a real challenge. Indeed, the fear that we would push people to make certain choices to limit their end of life care was a key driver of the "death panels" issue from a few years ago. The reality is that end of life care comes at a cost--often a great cost. We do ourselves a disservice when we ignore the costs. Costs should be a factor in decision-making, not the driver.

Another significant thing is the cost savings that comes from effective advance care planning. studies have shown more efficient, less costly, and generally better care when advance care planning has taken place. Furthermore, the flip side is the major costs involved with the courts, ethics committees, lost work time for families/friends, and other issues that come along with the cases that go bad and there isn't an advance directive. With advance care planning, we can harness these cost advantages and reduce these cost drivers--all without even getting into issues of making specific choices based on cost (which we ought to do as well).

Judith Thermidor Replied at 1:22 PM, 14 Oct 2015

Addressing the cost of care at the end of the life is a really big challenge. Several points may be considered to end of life such as hospice care, palliative care, end-of-life preferences, communication and ethics issues. I would like to make emphasis regarding the financial burden on families, it can be wrenching. Many families of terminally ill patients need to spend their household income on health care costs, needing to sell assets, taking out a loan, or obtaining a second job to pay for health care costs or losing their job to take care of their patients. The economic impact of daily family involvement in palliative care can be profound, especially owing to the lack of support services in low incomes areas that families are responsible for purchasing medications and home care supplies, for renting equipment, and for paying for transportation. Finally, the mean total last-year-of-life expenditures is related as a conundrum.
Understanding the limitation of economic analyses of Palliative care as providers, I think we can negotiate to establish a system hospice palliative care services (maybe it will be another point) in developing and poor countries. Remembering the cost of dying varies not only by cause but also by where people die.
Judith,

Dr. Ntizimira R. Christian Panelist Replied at 1:32 PM, 14 Oct 2015

Thank you all for your comments.
It is very challenging question. In Low and Middle income countries, the end-of-life care is inexistent and Neither Doctors, nurses nor support care providers are trained to manage patient in that stage. In my culture, we can't talk about end-of-life care when the patient is still breathing especially when the autonomy of the patient shifted to his/her family and it is extremely rude to mention about cost. Do you know that most of those countries (LMICs) have not advanced care planning or advanced directive in their management of critical cases? The cost of care at the end-of-life depend most of time of "Good Samaritan" who dedicated to vulnerable people. I hope in the future that community health workers at community level, as future human resource for health will contribute especially in low and middle incomes countries to reduce unnecessary cost at end-of-life care and give psycho-social support to patients and families who really needs help during that time. I hope the cost of care will not build a wall between providers and patients in end-of-life care and create a sense of dehumanize from eyes of OUR patients and their families where sometimes they are thinking that human being has lost the sense of humanity, which is not.

Christian Ntizimira

Elizabeth Glaser Replied at 1:53 PM, 14 Oct 2015

It is possible to do informed cost effectiveness or cost benefit analysis of palliative or hospice care.
Fro example, we can look at overall costs and quality of life with those receiving standard treatment in the last 6 months of life vs hospice care. Given the high cost of hospital treatment vs hospice/ palliative care , and the better pain control and decreased anxiety in hospice patients, it is likely that hospice is a far more cost effective alternative to standard treatment.
If we also take into account indirect costs and quality of life for family caregivers, it is even more likely that hospice care is more cost effective than standard treatment in the last 6 months of life.

Elizabeth

Kevin Haselhorst Replied at 2:19 PM, 14 Oct 2015

What I find is research studies and rational conversations are rarely effective when people are emotional and lives are at stake. The problem is that people generally like money being spent on them and doctors have to make a living. This dynamic switches when patients awaken to the prospect that the money being spent on them is not for their own good and peace of mind.

Rachelle Bernacki Panelist Replied at 5:35 PM, 14 Oct 2015

Interventions aimed at reducing healthcare costs often focus on areas where healthcare dollars are spent disproportionately on a population (e.g. end of life care) (keeping in mind the proportion of Medicare spending on care during the last year of life has been stable since the late 1970s). Sick patients need care that is often expensive and intensive, whether it is ICU care or hospice care.

That being said, the “value” of care (quality of care in relation to its cost) offers a framework that can identify efforts that align spending with desired outcomes. Much of the care that is provided to patients at the end of life is often low value care – care that is not well-aligned with what is most important to patients, and many elements of care that are valued by patients (pain and other symptom control) are not available universally unfortunately. Talking to patients, as palliative care clinicians do, and asking patients what is important to and valued by them by addressing their core concerns – quality of life, suffering, decision-making, family distress, survival – allows alignment of patient values with medical care options. In doing so, palliative care plays a major role in facilitating high value care. Palliative care consultation has reduced the length of stay, readmission rates, emergency department use, and ICU admissions. Compared to controls, patients who had a palliative care consult demonstrated direct costs savings of $1700 per admission, which is estimated to be 20% lower total costs per admission. Studies looking at costs before and after launching an inpatient palliative care consult service in one large, academic medical center found an estimated savings of $2 million annually.

One major challenge, however, is that despite the high value of palliative care, limited access has prevented patients from benefiting. A shortage of board-certified physicians in hospice and palliative medicine is a serious barrier to access.

What ideas do you have to address this shortage?

Rachelle Bernacki Panelist Replied at 5:35 PM, 14 Oct 2015

We have undertaken RN training in end of life discussions and found RNs to be very receptive, and have taken a great deal of ownership in this work. In a primary care setting, we trained 20 RN care coordinators for high risk patients to trigger physicians and have joint discussions with them. By and large, both the RN and MDs have appreciated this approach, and many times do the conversations together in a joint fashion.

Isabelle Celentano Replied at 5:55 PM, 14 Oct 2015

Thanks to everyone for a rich discussion today. Here is a summary of the discussion surrounding the role of cost in end-of-life care conversations:

In the ER, cost is no object when trying to save someone’s life. However, nonessential care provided at the end-of-life can create an unnecessary financial burden on terminally ill patients and their families. Cost should be considered in decision-making in these situations, but not the driver. Patients should also consider that more money spent and care given is not always in their best interest at the end-of-life.

Panelist Nathan Kottkamp noted that advanced care directives and planning can help reduce unnecessary spending at the end-of-life and often lead to better care. These directives can also reduce costs for families and caregivers by eliminating fees from courts, ethics committees, lost work time for families/friends, and other issues that arise without these directives in place.

In low-income settings, families often bear the majority of the cost burden. In areas without strong palliative care systems in place, family members are often responsible for the costs associated with medication, home care supplies and equipment, and transportation. The topic of cost is rarely brought up during care in these settings as well because it can be considered rude. Community health workers may be able to improve this situation by giving psycho-social support to patients and families, thus preventing unnecessary care and costs.

Hospice and palliative care systems are more cost effective than standard care at the end-of-life. Hospice patients also have better pain control and decreased anxiety, and these systems often take into account quality of life for caregivers.

Panelist Rachelle Bernacki noted that care provided at the end-of-life is often low-value, or not well-aligned with what is important to patients. Conversations should focus on making care high value by aligning it with the patient’s preferences regarding quality of life, suffering, decision-making, family distress, and survival. Even providing high quality care is not enough, however, when there is a shortage of board-certified hospice and palliative care providers.

What are ways we can address the shortage of providers certified in hospice and palliative care? What tools can these providers and those assisting with care at the end-of-life use to help patients have end-of-life conversations with both their loved ones and providers?

A/Prof. Terry HANNAN Replied at 6:22 PM, 14 Oct 2015

Just in from my NEJM Alerts

Perspective
Toward Evidence-Based End-of-Life Care
Scott D. Halpern, M.D., Ph.D.
October 14, 2015DOI: 10.1056/NEJMp1509664

Rachelle Bernacki Panelist Replied at 7:40 PM, 14 Oct 2015

I’m delighted to participate in these conversations about end of life care and advance care planning. I am the Director of Quality Initiatives in the Department of Psychosocial Oncology and Palliative Care at Dana Farber Cancer Institute and jointly appointed in the Division of Aging at Brigham and Women’s Hospital (BWH). I also practice clinical palliative care and geriatrics. Over the past three years, I’ve directed a randomized controlled intervention trial to improve conversations between doctors and patients with serious illness, jointly administered with Ariadne Labs and Harvard School of Public Health. As the associate director of the Serious Illness Care Program, our goal is for more, earlier and better conversations between patients and clinicians about personal values and goals.

Christine Morton Replied at 7:58 PM, 14 Oct 2015

From the perspective of an Emergency Nurse and daughter to elderly parents I'm very happy to see that there ar professionals moving forward on educating physician to have conversations with their patients about advanced directives. I'm visiting my 83 year old mom this week and she tells me she tried to have a conversation with her doctor about filling out advanced directives so that if she was incapacitated there would be some direction for her care. She told me that her physician said for her to wait until she was in hospital. We also spent quite some time searching th internet for the local forms to fill out to have advanced directives in place. What we did find is vague and not straight forward. I was very surprised.

Kevin Haselhorst Replied at 8:08 PM, 14 Oct 2015

I'd like connect with you through Linkedin? Kevin Haselhorst, MD

Nathan Kottkamp Panelist Replied at 9:54 PM, 14 Oct 2015

Christine, your story is terribly disappointing, but all too common.

Monique Germain Replied at 12:55 AM, 15 Oct 2015

Linda,
Very powerful. Yes, families tend not to entertain discussions about what may happen or what will happen to their loved ones. Much remains to be done in terms of training nurses to engage in helping families and friends find support in difficult times. I believe that nurses do a wonderful job in meeting the medical needs of people experiencing end-of-life issues but they need to do more. They need to realize that the world depends on them to provide comfort, relief, and peace.
MG

Judy Phillips Replied at 5:38 AM, 15 Oct 2015

Thank you MG,yes the world does depend on us (nurses) for comfort, relief, and peace. Every day I personally deal with end -of-life conversations. I strive to give them loving, but decisive truthful information. Many times they are relieved to hear the truth, but sometimes they wish to press on for more treatments. More treatments often cause decreased quality of life and they are told this as well.
Judy

Inge Corless Replied at 7:17 AM, 15 Oct 2015

As I read through this excellent discussion I began to wonder whether the work of Dame Cicely Saunders, Florence Wald a former dean of the Yale School of Nursing, Balfour Mount MD and many others had less impact than we had wished or worked for with the creation of the hospice movement. Perhaps it is that each person confronts his/her own death and as importantly, each health care provider also confronts the death of one of her/his patients. What we know theoretically becomes first person when we assume either of these roles. I am delighted with the renewed interest and activities in this area so that each of us can have the death we would wish and health care providers can feel a sense of satisfaction in helping patients to achieve their goals.

Lisa Kennedy Sheldon Panelist Replied at 8:37 AM, 15 Oct 2015

Thank you for the interesting points on the decisions at the end-of-life including cost - often a neglected and avoided topic on the personal level but a critical factor at the national policy level.

I would like to address to today's questions:
What are ways we can address the shortage of providers certified in hospice and palliative care? What tools can these providers and those assisting with care at the end-of-life use to help patients have end-of-life conversations with both their loved ones and providers?

First, The terminology has been tricky in the USA where palliative and hospice care often equal end-of-life and dying - topics that many patients, families and even doctors and nurses do not want to discuss as they may remove hope from the equation. The umbrella term - supportive care - may be a better entrée into a system of care that does not focus on medical diagnosis, treatment and cure.

Secondly, in many resource-challenged countries where diseases are diagnosed at later stages. In these countries, there is a scarcity of training programs for healthcare providers in supportive care, symptom management, palliative and hospice care. The need for training is beginning to be addressed by American organizations with outreach to these countries (e.g., American Society of Clinical Oncology's Palliative Care Training Program [http://www.asco.org/international-programs/international-palliative-care-work...], and Harvard Medical School [http://www.hms.harvard.edu/pallcare/International.htm], and international groups such as the Middle East Cancer Consortium (MECC,http://www.cancer.gov/about-nci/organization/cgh/research/mecc). The MECC Palliative Care Program has been delivered in Middle Eastern countries such as Oman, Jordan and Turkey to train interdisciplinary groups about the management of distressing disease-related problems such as pain and enhance all aspects of a patient's quality of life, including physical, psychosocial, and spiritual dimensions.

What other training programs and web resources are available to address supportive and palliative care priorities and increase the cadre of trained nurses, community health workers and doctors who can address the symptoms and supportive care needs of people with life-limiting conditions?

Rachelle Bernacki Panelist Replied at 5:30 PM, 15 Oct 2015

Despite the shortage of palliative care clinicians, the expansion of accountable care organizations (ACOs) presents opportunities for both ACOs and palliative care teams to extend their impact. Palliative care is positioned to support value through both direct clinical care of individual patients and care for populations of the sickest (and most expensive) patients cared for within ACOs. "Population management" has been used to describe many interventions and models, but it has yet to be consistently defined; it strives to enhance clinical and financial outcomes for defined populations. In the context of palliative care, we think population management should include: (1) identifying high-risk patients using objective data and (2) selecting a "targeted" intervention to match patients' level of need. Adopting new responsibilities in population-based management requires a novel framework of practice for most palliative care clinicians however. We proposed six steps that are critical to any population-based healthcare delivery model: Identify, Trigger, Act, Measure, Edit, and Disseminate (iTAMED). You can read more about this approach here: http://online.liebertpub.com/doi/abs/10.1089/jpm.2014.0231 (if you cannot access it here, please go to Research Gate, and you should be able to request access from there.)

Monique Germain Replied at 12:27 AM, 16 Oct 2015

Lisa,
Thank you for your questions. They would be excellent research questions.

I am quoting here what you said because it is so relevant. In the following paragraph, you stated,
"First, The terminology has been tricky in the USA where palliative and hospice care often equal end-of-life and dying - topics that many patients, families and even doctors and nurses do not want to discuss as they may remove hope from the equation. The umbrella term - supportive care - may be a better entrée into a system of care that does not focus on medical diagnosis, treatment and cure".

How true! I have a very good friend who is a nurse and a caregiver to her dying husband. Under the umbrella of palliative care, she has been benefiting from some basic services including having a medical team come at home to visit. But I see what is missing in this instance is the lack of support to the caregiver herself who needs the support to sustain the decision made. My friend has become frustrated and I noticed that she was was using palliative and hospice care interchangeably. As such, she was losing the strenght to witness her husband deteriorate without being able to intervene -medically. I finally encouraged her to seek support from her church which she attends regulary is a in order to be at peace with her decision. Hope I did the right thing.
Monique

Amungwa Athanasius Nche Replied at 1:27 AM, 16 Oct 2015

Dear Monique,

I am so pleased with the quotation you made and the suggestion that
end-of-life-care(EOLC) should now be called supportive care. It is true
because such a term is stigmatizing and even accelerates the concerned
individual's departure from this earth and makes all health care personnel
who have not been trained in EOLC inadequate EOLC issues and sometimes
abandon the patients to themselves. It is similar to when when the term
use the term terminal illness, its like the person is at the end of life
and will soon leave(die), like on stage when an act is going to close and
you will not see it again. There also term "AIDS patient". Here they use
positive terms and say someone living with HIV or AIDS which is more
acceptable.
UNESCO and UN AIDS quickly came out with terminology guidelines so that
such people may not feel and act stigmatized. Could it be time now that we
start thinking of how to replace such words like end-of-life with care with
a more agreeable term and if were to be so, which authority would do this?

Amungwa

*Amungwa Athanasius Nche*
*Public Health Consultant with the CBC Health Services*
MPH(Manchester Metropolitan University), PHP.PH (TAU-ongoing)
*P.O. Box 2157*
*Alakuma, Road-Mankon*
*Bamenda*
*North West Region *
*Cameroon*

Skype Address: nchemuwuffimanyonga


"





"If a friend of yours does not give you a smile, give him one of yours"
Annon

Lisa Kennedy Sheldon Panelist Replied at 5:55 AM, 16 Oct 2015

Monique and Amungwa,

Thank you for your comments. As far as the term , supportive care, I wanted to clarify that I am not minimizing the importance of palliative care and EOL conversations. Both the concept and the conversations are highly relevant to caring for people with life limiting and chronic illnesses and during aging when life expectancy is shorter. It is the bundling of terms - palliative and hospice care - that has become problematic for patients and clinicians. While we know they are not equivalent, the public is often confused and this is reflected in a reluctance to accept these services. Home-based supportive care systems with outpatient clinic support, telemedicine consults, and tertiary referrals as needed should be central to system that delivers supportive/palliative care, decreases cost and improves quality of life as the end of life approaches.

What I would like to suggest is that we begin a broader discussion about supportive care measures - psychosocial care, symptom management and family/caregiver support in community settings. When we incorporate these dimensions into a system of health care, we can identify the needs of patients and families and address them through a system that supports quality of life and minimizes suffering while caring for the important caregivers in situ. It seems the system is less well established to provide care outside of the acute care and hospital systems.

Nathan Kottkamp Panelist Replied at 7:27 AM, 16 Oct 2015

I think relabeling may be beneficial. It may help palliative care to be better recognized as a complement to other care. the all or nothing model misses lots of opportunities.

Elizabeth Glaser Replied at 10:15 AM, 16 Oct 2015

Often palliative care and curative services is viewed as an either/or situation: With a broader spectrum of care and coverage for services , palliative care can help manage the symptoms of treatment as patients reach the end of curative options, then bridging a patient and family over to full end of life services.

In both my work and personal life, I have seen a lot of barriers to opening the conversation about supportive/palliative/hospice/comfort/non-curative focused care because of patient-physician dyads that are focused on goals that are unrealistic given the clinical picture. Standing at a remove from the relationship, a nurse can , and, in my opinion should, provide reality checks by asking the patient and physician about their goals for treatment and the next step in the event that the current treatment is not effective. I was very fortunate to work with physicians that deeply cared about their patients , but sometimes that investment led us to focus on labs, IV sites, appointments, etc while ignoring the bigger picture. Clinicians are human; It can be hard to let go.

While we may no longer be able to cure our patients, we can still heal the person and their family by allowing them the time to say goodbye, by relieving the patient's pain, and by providing emotional and spiritual supports to patients and family as they grieve.

We can change the name of the service but unless we change our mindset about end of life care , the stigma will remain.

Kevin Haselhorst Replied at 2:46 PM, 16 Oct 2015

Creating distinctions between palliative care and hospice care; supportive
care and end-of-life care is crucial to the EOL conversation. For
simplification I offer the following terminology.

Palliative care is a mix of medial care and medical intervention. I
consider medical care being administered by a nursing equivalent and
medical intervention provided by a physician equivalent. The balance of a
yin/yang (nothing/everything -passive/aggressive) option being afforded to
patients actually empowers patient choice. Sadly, "doing nothing" is rarely
permissible and is not a viable option given to patients wholeheartedly.
Palliative care has to provide patients the choice to defer on medical
intervention and for them to feel supported in their desires to let go and
be free of suffering without feeling abandoned or condemned.

Patients receiving palliative care have end-stage disease and are in the
midst of the time to survive. In recognizing that patients with end-stage
disease are in a precarious (no-win) situation, they are to be treated
conservatively. Therefore, aggressive medical intervention is
unconscionable and admitting these patients to the ICU is a fate worse than
death. They can be admitted to the the hospital ward if the survival mode
is still operable as long as they were also given the option to go home
with full medical care to support that choice.

The term supportive care is ambiguous and leaves providers guessing as to
what particular care a patient desires to feel supported. "Be careful what
you wish for" is the warning attached to supportive care. In the standard
ethical practice of medicine, providing "appropriate care" takes precedence
over catering to patients or caregivers. Appropriate care is provided
during the time to survive and appropriate care is provided during the time
to die.

The term "End-of-life care" might be perceived as providing compassion,
pity or a lifetime achievement award. My initiative is to change the
perception of death being wrong and the idea that something is wrong with
those dying. Individuals on the last leg of the journey need to be lifted
and rewarded. I title this final destination "Graceful Departures." The
destination vacation of a lifetime or having the experience of heaven on
earth would not be perceived as "end-of-life care," but rather boarding
Graceful Departures and receiving the best accommodations and amenities.

Hospice care has a reputation for being the killing fields that patients
are relegated to during the time to die. I prefer to empower patients with
the term "Omega care." Divine beings who are powerful proclaim: "I am the
beginning and the end." They claim to be almighty while living and dying.
Hospice care is provided to those dying by others because they are ill.
Omega care is claimed by individuals because they intend to die well.

Any intention to initiate EOL conversations becomes complete when we agree
to agree to finalize these conversations with the goal of providing
patients dignity. Dignity encompasses patient choice, certainty and mercy.

Monique Germain Replied at 4:44 PM, 16 Oct 2015

Thanks for the feedback.
Monique

Elizabeth Glaser Replied at 6:06 PM, 16 Oct 2015

I did a clinical fellowship in addictions many years ago at HMS. Much of that training has been very helpful for dealing with end of life issues.

A little over ten years ago, we had a young man in our HIV practice who was in his early 30s , was once again on the inpatient unit, and was dying of complication of AIDS. One of the medical residents had emailed our clinic doctor , who was the patient's primary physician, to say that the patient was in denial refusing to discuss discharge options such as hospice.Our doctor forwarded the email to me, asking if I would talk to the patient. I went up to the unit to speak with him.

I asked how he was doing , and said that I had come to talk about his plans after discharge because the docs were concerned about what would happen once he got home. Keep in mind that he was severely ill and each day was being seen by four different teams, Medicine, ID , Nephrology , and Neuro, during their separate rounds.

What he said has stayed with me :
" Elizabeth, I wake up and there is a group of people standing around my bed that I don't know, saying things that I can't understand. I don't know who these people are. I don't remember anyone talking to me about leaving the hospital. "

So I talked to him. He was not denial; he knew he was dying, but was scared. He didn't know how he would be able to return home as he lived in a small cottage with a loft bed that could only be accessed by a ladder. He had a cat that he loved and was worried about. We talked everything out and made a plan. He designated a health care proxy, we got an DNR order and comfort measures only in place . We found someone to take his cat, and a friend that welcomed him to move in while on hospice. I set up a hospice referral. I held his hand and sat quietly with him as he cried.

Within a few days , he was discharged to his friend's home with hospice service and died soon after.

In his case, there was no need to use special terminology, he only wanted someone to listen to his concerns , work on a plan to address them, and then allow him to began the process of grieving.

In my opinion, what most patients want is simply for us to meet them where they are at, in order help them on their journey. We can do that by being clear and honest, listening to their needs and wants, and then, as best as possible, by relieving the patient and their loved ones' fear, anxiety, and pain.

Doris McNeill Replied at 6:57 PM, 16 Oct 2015

Elizabeth, You mentioned meeting the patient "where they are". That is exactly what they would like to see from all professionals they deal with regarding their end of life statuses. I work in the HIV/AIDS field and have had several clients die as a result of either the disease itself or other conditions. The most important thing they are looking for is some level of comfort and control.

I had one client who was on and off hospice care for nearly two years. He refused any medical interventions for his HIV/AIDS, despite his physician's advise. As his advocate, I had to argue that this was his decision and his right. The hospice care that was set up essentially was service giving him pain management, personal care, and a sense of dignity. His reasoning was that he had already suffered so very much, he just wanted to be able to be in control of this one thing in his life. (The back story of his life was very tragic.) As his medical case manager I had to honor his decisions despite contradicting our mission of getting HIV/AIDS diagnosed persons healthy. I advocated to stay on his case because I was the only constant in his life at the time. All he wanted was at least one person who would listen to whatever was on his mind. Every ER visit/discharge was the same for this client as it was for the patient you mentioned. Sometimes our work is not easy or pretty. But, every once in awhile our clients/patients teach us that we need to stop, slow down and really pay attention to them and their needs. This client taught me to accept death in a way I had not thought of before. It is inevitable for us all. And while the process of accepting it is not easy, it is possible. It helped me on a personal level with my own grief processes. An invaluable lesson.

Yes, we would all like to have a well laid out plan on what to do with our patients/clients during their end of life periods, but we need to remember to stop, slow down and focus on those actually going through it. The process is very individual for all those affected. When my father died of cancer there were no medical professionals helping any of my family members on how to deal with it. These are your results and that was that. It wasn't until the hospice staff entered the picture that they understood that this was a process for everyone to go through for both the living and the dying.

At the agency I work in currently, we periodically invite Hospice agencies to come in with their presentations. It is an opportunity for our staff to continue learning and understanding the process to better serve our clients' needs. Sometimes we are so focused on keeping people healthy that we forget what happens when death presents itself.

Susan Wood, PNP-BC, MPH, IBCLC Replied at 9:00 AM, 17 Oct 2015

All:
I am riveted on this discussion and grateful we are having it.
As a nurse and as a daughter to an elderly & aging parent, I think about these issues on a daily basis. My 91 year old mother watches as her world narrows due to her own precarious medical condition, and as she experiences the loss of dear friends on a frequent basis. I don't know how to talk to her about these issues - they are so close. Her wonderful primary care provider (who she sees weekly and who tweaks her meds to keep her alive) has been her primary for over 30 years. He is a Hospice Doc as well, yet also seems at a loss as to how to care for the emotional/spiritual needs my mom has.
All the Advanced Directives have been completed and were discussed with her. I just keep thinking: is there something more we should be doing and, if so, what is it & who should be doing it?

Nathan Kottkamp Panelist Replied at 8:15 AM, 18 Oct 2015

Susan,
Great job on doing the homework and discussing it. The something more is making sure that your mother's providers actually know about the advance directive. It never ceases to amaze me how often ADs are ignored in practice for myriad reasons. The best approach is to be proactive about it.
Good luck!
Nathan

Jean Galiana Replied at 10:26 AM, 18 Oct 2015

I found this interview to be very interesting and look forward to reading The Shift.

http://www.npr.org/sections/health-shots/2015/09/28/443468965/a-nurse-reflect...

A Nurse Reflects On The Privilege Of Caring For Dying Patients

As life draws to an end, compassion is more important than food.

Palliative care nurse Theresa Brown is healthy, and so are her loved ones, and yet, she feels keenly connected to death. "I have a deep awareness after working in oncology that fortunes can change on a dime," she tells Fresh Air's Terry Gross. "Enjoy the good when you have it, because that really is a blessing."

Brown is the author of The Shift, which follows four patients during the course of a 12-hour shift in a hospital cancer ward. A former oncology nurse, Brown now provides patients with in-home, end-of-life care.

Talking — and listening — are both important parts of her job as a palliative care nurse. This is especially true on the night shift. "Night and waking up in the night can bring a clarity," she says. "It can be a clarity of being able to face your fears, it can be a clarity of being overwhelmed by your fears, and either way, I feel like it's really a privilege to be there for people."

Sometimes Brown finds herself bridging the gap between patients who know they are dying and family members who are still expecting a cure. "There can be a lot of secrets kept and silences. ... One thing that palliative care can be really good at is trying to sit with families and have those conversations," she says.

While some might see her job as depressing, Brown says that being with people who are dying is a profound experience. "When you're with people who die ... and being in their homes and seeing their families, it's incredible the love that people evoke. And it makes me realize this is why we're here; this is what we do; this is what we give to each other."

On cutting costs and stretching nurses too thin

There's a sense that you can stretch a nurse just like an elastic band and sort of, "Well, someone called off today." That means a nurse calls in and says that she's sick or her car broke down or he won't be there, and sometimes we're able to get someone onto the floor to take that person's place, but often we're not. Or an aide might not be able to show up for whatever reason, and then the assumption is just, "Well, the nurses will just do all the work that the aide would've done," and the problem is that people do not stretch like rubber bands, and even rubber bands will break if you stretch them too far.

On loved ones wanting to feed their dying family members

Theresa Brown is a critical care nurse in Pittsburgh. Her previous book is Critical Care: A New Nurse Faces Death, Life, and Everything in Between. i
Theresa Brown is a critical care nurse in Pittsburgh. Her previous book is Critical Care: A New Nurse Faces Death, Life, and Everything in Between.

C. Ken Weingart/Algonquin Books
Food is so fundamental, and their feeling is "I'm letting my husband starve to death and that's wrong." So I have to talk them through the process of the body slowly going in reverse. All the processes we think of as normal and that are integral to life, they're all slowing down. And so the body just doesn't need food when someone gets very close to the end of their life and, in fact, they found that forcing someone to eat can mean that they just have this food sitting in their stomach, they're not able to digest it, can actually make them more uncomfortable. So I talked to [one family member] about that, but tried to do it as gently as possible, while also acknowledging the incredible love that was motivating her and trying to honor that, but make it clear that she needed to show her love by being close with her husband, by holding his hand, by talking to him, but not by feeding him.

On whether patients ask if they're dying

No, they don't. ... I think it's because they're afraid. They want to just take things day by day. I did have a wife once ask me. She said, "You know, I'm not new to this, and I want you to just tell me. Is he dying?" And at that point I was a pretty new nurse and I didn't have the experience to know to say, "Yes." Now I would know to say that. ... I got a sense that she really wanted to know and no one else was telling her. ...

Physicians can have a mindset of "we're thinking positively, we're focusing on the good that can come, and we're not going to talk about 'what if it doesn't work out.' " And they will sometimes pull the nurse aside and say, "What's going on?"

On leaving the hospital setting for palliative care

I love the hospital. I never thought I would leave the hospital, but I left to see patients outside the hospital because in the hospital I feel like we never see people at their best. They feel lousy. We wake them up at night. We give them no privacy. We give them, really, almost no dignity. We tell them what they're going to do when, what they're going to eat when, what pill they're going to take when and no one likes living like that. ... So I wanted to see people in their homes because I thought there's got to be a way we could make the hospital better. Seeing what it's like for patients in their homes I thought would show me that. And I would say overwhelmingly what I've seen is control: People have so much more control when they're in their homes and it should not be that hard to give them back a little bit more control in the hospital.

On traveling to a patient's home

When I started, I thought, "I can't believe I'm doing this. I can't believe I just drive up to these houses and go inside them." I live in Pittsburgh, but it can get very rural feeling actually pretty quickly, and I remember ... going to [a house] that was already through back-country roads and then down a gravel driveway, and I thought: "What am I doing? Am I insane?" And then I went into this house, and this family was so loving and amazing and wonderful, so it was a great education for me not to judge. And I know that my workplace checks out and makes sure that the places we're going are real, so that's comforting, but it's definitely a giant leap of faith, and you just have to make that leap.

On home care versus hospital care

Often in the hospital they can be more comfortable in terms of we're relieving their pain, we're getting them anti-nausea medications very quickly, but ... they're not as comfortable with themselves, and in their homes they seem much more comfortable with themselves and with the people around them, and I had never thought about those two things as being so distinct, but they are. So the question then is how do we give people care that marries those two things, because they're both so important.

On how patients express appreciation to nurses

A very popular gift in my hospital was Starbucks [gift] cards. ... Often people bring in cookies and chocolate and that's wonderful, but I remember one nurse saying, "You know, I wish someone would just bring in a lasagna." ... Because we never have time to eat and then you go into the break room and you're hypoglycemic and you see all this chocolate, and so you eat all this chocolate, which doesn't really help you feel that much better in the long run. So to actually drop off a meal is wonderful.

Isabelle Celentano Replied at 8:45 AM, 19 Oct 2015

Thank you again to all of our exceptional panelists and community members who participated in this rich discussion. We greatly appreciate the insights everyone has shared, and look forward to continuing to discuss these important topics.

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Isabelle Celentano Replied at 9:25 AM, 4 Jan 2016

Many thanks again to our panelists and members who participated in this Expert Panel discussion last October!

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Monica Jumpp Replied at 1:38 PM, 12 Apr 2016

Many thanks again to our panelists and members who participated in this Expert Panel discussion on Initiating End of Life Care. As National Health Care Decisions Day approaches, we thought we would post a discussion brief on this insightful conversation. http://www.ghdonline.org/end-of-life-conversations/discussion/initiating-end-...

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Panelists of Initiating End-of-Life Care Conversations and GHDonline staff