Thursday, February 11, 2016

Be My Valentine! (Palliative Care Style)

In the afternoon, the team gathered round a festive red and pink table, surrounded by hearts and sweets.

The morning was filled with the hustle and bustle of Palliative Care, no easy feats.

Navigating the patient’s course and determining their wishes,

Unrelieved pain, intractable nausea, constipation, and moral distress, the nurse dishes.

Finding out what matters most, best possible day, and providing support,

Coordination of care and communication, both often out of sort.

Advocating for the patient and providing compassionate care,

Palliative care is not for the weary, but those who dare.

The team stops to celebrate the holiday of L-O-V-E,

Valentine’s Day reminds us that love and our wishes are key.

These cards are inspired by the work we do,

Dedicated to the patients, families, and Palliative Care teams- whoo-hoo.

And finally, roses are red, violets are blue,

Love, kisses, and Valentine wishes.

----

Thank you to the palliative care doctors, nurses, social workers, chaplains, medical assistants, and support staff! You are the culture changers, the difference makers, the patient and family advocates! Never forget that your work extends beyond the hospital walls, the clinic doors, and the community roads.

This team wellness activity is brought to you by The NorthEast Palliative Care Team (aka NorthEast Palliators), who are part of Carolinas Palliative Care and Hospice Group and Carolinas HealthCare System in Concord, NC. Fun, creativity, and laughter are high priorities to their Team Wellness Plan.

Photo credits: Erica Frechman and Carolinas Palliative Care and Hospice Group - Used with permission under CC BY SA 2.0

Thanks to Erica Frechman for sharing this team activity with us. Below are some of the cards they created as part of team wellness. Maybe this will inspire your team to consider a similar activity? Let us know if you do! - Ed.











Thursday, February 11, 2016 by Pallimed Editor ·

Tuesday, February 9, 2016

The New World of Outpatient Palliative Care

by Kimberly Curseen

As the field of palliative medicine expands much attention and resources have been placed on inpatient consultation, with very positive results for patients and the health care system. We can now see access to inpatient palliative care is becoming a standard. The natural progression is to then extend the same important resource to patients in the outpatient setting. Outpatient palliative care provides resources for symptom management for patients and families going through aggressive and maintenance treatments for their serious illness.

Studies for the last decade have been demonstrating the effectiveness of early palliative care in improving patient quality of life and reduction in acute care resource utilization at end of life. Although results of the impact of outpatient palliative care may vary in the literature, it is consistent that these programs improve aspects of quality of life that patients consider to be important.

The Temel study in the New England Journal of Medicine "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" is one of the most cited studies showing the impact that early longitudinal palliative care can have on patient's quality of life. Patients were randomized to integrated palliative care with oncology care vs standard oncology care. The early palliative care intervention resulted in improved quality of life and mood in addition to less aggressive care at end of life and possibly prolonged survival for patient receiving the intervention.

A study in Archives of Internal Medicine in 2004 "The Comprehensive Care Team: A Controlled Trial of Outpatient Palliative Medicine Consultation" showed improve outcomes in spiritual distress and dyspnea but not in pain or depression. Another study in the Journal of Palliative Medicine in 2012 "The Impact of an Outpatient Palliative Care Consultation on Symptom Burden in Advanced Prostate Cancer Patients" showed that in their preliminary data patients had improvement in pain, drowsiness, fatigue, depression, sleep, sense of well-being, and anxiety.

In 2013 the Journal of Palliative Medicine published "Moving Upstream: A Review of the Evidence of the Impact of Outpatient Palliative Care" which reviewed the current literature up to that point on the impact of outpatient programs. The evidence supported that outpatient palliative care could "...1) improve patient satisfaction, 2) improve symptom control and quality of life, 3) reduce health care utilization, and 4) lengthen survival in a population of lung cancer patients".

With a growing body of literature supporting the need for outpatient palliative care, in addition to other health professions accepting that earlier integration of these services is important for patients, we as a profession are continuing to discuss how best to meet this growing need. Outpatient palliative care poses a variety of challenges for sustainability. Some of these include:

  • What defines outpatient palliative care? What are the core team members that must be available to patients to be an outpatient palliative care clinic?
  • How does a clinic continue to financially support non-billing members of a team?
  • Does the team assume primary symptom management or write recommendations?
  • What is our role in complex opioid management?
  • Should outpatient palliative care providers have training in addiction medicine?
  • Do patients transition out of outpatient palliative care?
  • How do we interface with primary care providers? Are we the primary providers for the seriously ill?
  • Who qualifies for outpatient palliative care? What defines a "serious illness"?
  • Should clinics be embedded in specific specialty ie oncology, geriatrics, cardiology etc or stand alone?
  • What guidelines are we following for symptom management? Could a patient move around the country and receive the same standard of care from clinic to clinic?
  • Are our fellows adequately trained to assume non-academic outpatient palliative care positions?
Practicing outpatient palliative care has been the most rewarding work of my life and I cannot imagine doing anything else. However, I find myself often concerned with whether my clinic is providing the standard of care our patients deserve. I find myself often with faced with challenging questions about how to deliver effective care with limited resources in addition how to protect these resources in fiscally troubled times. This year at the AAHPM annual meeting in Chicago several members will be attending as exploratory to meeting to develop an Outpatient Palliative Care SIG. I am hoping that it will help develop a network for Outpatient providers to share the challenges and solutions to issues that many of us are facing. (If you are a AAHPM member see AAHPM Connect for more info.)

Please join us for #HPM tweetchat to discuss this very important topic Feb 10th at 9:00pm.

T1: What defines an outpatient palliative care? Is a single provider enough?
T2: What are the challenges to sustainability of outpatient palliative care clinics?
T3: Should outpatient palliative care providers be trained in addiction medicine?

Dr. Kimberly Curseen is an outpatient palliative and geriatrician doc in Georgia working to advance access to quality palliative care for people with serious illness. 

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/10/2015 - 9p ET/ 6p PT
Host: Dr. Kimberly Curseen

 for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

References:

Michael R et al. The Comprehensive Care Team A: Controlled Trial of Outpatient Palliative Medicine Consultation. Arch Intern Med 2004; 164(1): 83-91 OPEN ACCESS PDF

Michael R et al. Moving Upstream: A Review of the Evidence of the Impact of Outpatient Palliative Care. Journal of Palliative Care Medicine. 2013, 16(12): 1540-1549

Temel J et al. Early Palliative Care for Patient with Metastatic Non-Small Cell Lung Cancer. N Engl J Med 2010; 363:733-742 OPEN ACCESS PDF

Yennurajalingam S et al. The Impact of an Outpatient Palliative Care Consultation on Symtpom Burden in Advanced Prostate Cancer Patients. Journal Of Palliative Medicine 2012; 15(1): 20-24 NOT OPEN ACCESS

Image Credit: Outpatients via www.tamesidehospital.nhs.uk. All Rights Reserved
Image Credit: #hpm square by Christian Sinclair for Pallimed. CC BY 2.0

Tuesday, February 9, 2016 by Pallimed Editor ·

Monday, February 8, 2016

What Would Any of Us Want?

by Amy Getter

In the recent JAMA article "What would mom want?" I was saddened to read that the family was so shocked at the burden of caring for a dying family member. Since medical technology has removed the expectation of dying in the home in recent years, many people have not learned about caring for loved ones from prior generations (my own mother’s mother died in the hospital, but my mother’s daughters thanks to hospice had the opportunity to care for her in the home). For a first time experience as caregivers in a family, shock is but one of the many difficult emotions that will be experienced undertaking care of a dying loved one. For any family undergoing a death in the home, it is anguishing and fearful and the exhausting final days take a tremendous toll on everyone. This is what hospice care is supposed to assist families with: knowing beforehand what to expect, understanding best possible ways to manage all the advancing care needs of a bedbound person in the throes of dying, using both pharmacological and non-pharmacological means to promote comfort, and providing the emotional support to family members undergoing likely the most difficult days of their lives.

Morphine, as we all know, gets a very bad rap, thanks to the internet and people’s misunderstanding of its use, and also happens to be one of the favorite hospice medications to manage pain and shortness of breath at the end of life. How many times I have heard family members express fear of small doses of morphine, both that the loved one might become addicted, and that they could overdose them…not the least of which is the fear of giving the last dose (someone will in fact be the person to do this). The family member who suggested a fatal dose of morphine reflected a similar thought expressed too often by families after the death: the belief their loved one died as a result of morphine “overdose” that was initiated by hospice in the end days.

As a hospice nurse, I have worked in several agencies among a number of wonderful professional staff on the hospice team. But something none of us who see death on a daily basis can become complacent about is the fact that dying, though a universal and “normal” experience, has an inherent level of suffering and angst for those who are dying and those who are caring for them. There seems to be nothing “normal” about it, when you are the one staying up during the night cleaning mom’s mouth out, putting drops of medicine in, and watching the horrible rise and fall of agonal breathing.


What would any of us want, as we lay dying? To be kept clean, as this is part of providing dignity, to have our loved ones near, to have the symptoms associated with dying managed as best as can be, to die in peace, (or to die while we sleep, to be in our own home, or to hasten our dying, or prolong it)? These seem simple enough requests, yet any of us who have been present during the active dying phase of illness know how often it is in fact a great effort to keep a patient’s pain at bay, while maintaining clear thought, and reduce shortness of breath yet not have to overly sedate, and deal with the advancing care needs of a person who is bedbound and incontinent. And ultimately to advocate for the person who is dying, so that their wishes can in fact be followed.

Dying is indeed a process. It takes some people many, many days of actively dying to actually take their last breath. Families are exhausted and burdened with the care of a dying loved one, twenty four seven times the many days and weeks of a terminal illness coming to a finale. No one should underestimate how difficult the task of dying is, for the one who is dying, and those that provide the care. And hospice staff need to be available as much as possible to show family how to minimize suffering at the end of life (not just be the nurse on the phone who tells a concerned family member who calls to report loud, gasping breathing, that this is a “normal part of the dying process, and give another dose of Levsin or turn them on their side”, but be the staff who show up even though not much more can be “done” other that provide a calm presence).

Though we each of us only lose one mother, I am reminded of all the mothers I have cared for in the years of being a hospice nurse. Some mothers I have sat with as they lay dying have wanted more pain medicine, but their adult children worried about them becoming too somnolent. Some mothers have told me they wanted to use physician assisted dying, but had families and/or physicians who could not abide this decision. Some mothers were too young when they died to see their children grow up, and others held their dying children in their arms. Some mothers have been overwhelmed with guilt at the burden they feel they have become to their family. Other mothers have had an expectation even though they caused their children tremendous grief in the live-in years that those children “owed them” the day to day care as they became infirm. Some mothers died alone, estranged from their families. Some mothers had the ability to hang on long beyond anyone’s imagination, to have a new grandchild placed next to them. I have listened to a daughter tell me how hard she tried to have a genuine conversation with her aging parent about end of life planning, and how quickly her mother changed the subject to talk about the next family dinner. And I listened to my own mother as she told me only 24 hours before her death that she would hear us, even when she couldn’t answer, and to remember that as she lay dying.

Having the conversations about life coming to a close, and the many roads one may choose on the journey, needs to be part of how we provide care for anyone with a life threatening illness. The question “What would mom want?” can and should be asked long before mom is dying. I was blessed to have a mother who expressed her desires clearly to her daughters before she lost the ability to do so. Perhaps the greatest gift our mothers give us is telling us what they want as their life ebbs, how much care, how awake they want to be, how they hope to die, while they can still express what they want. And perhaps our greatest gift is to listen.

Amy Getter, MS, RN, CHPN, is a hospice and palliative care nurse consultant who shares end of life stories and lessons learned at hospicediary.com

Photo Credit: Carrie Hoekema Smith via the Pallimed Facebook Page (used with permission)

Monday, February 8, 2016 by Pallimed Editor ·

Thursday, February 4, 2016

Celebrate National Women Physician Day

by Meredith MacMartin

February 3rd, 2016 is the First National Women Physician Day, held on the 195th birthday of Elizabeth Blackwell, the first woman to receive a medical degree in the United States. - Ed.

As a palliative care doctor, most of my professional life is spent with patients and families dealing with the physical and non-physical challenges of serious illness. I have sat with many patients and stood next to their families as last breaths were drawn. Death and dying is not the only thing I do, but it’s a substantial part of it. So it’s interesting that for me, being a doctor is closely linked with the beginning of life. I’ve never been a doctor without being a mother. My oldest son was born at the beginning of my fourth year of medical school and he was 13 months old when I started residency. For me, doctoring has been entirely about discovering new life at home, and learning to recognize the end of life at work.

As a doctor, I’ve taken overnight call through three entire pregnancies, and went back to work when my children were weeks old. I’ve pumped breast milk in rooms without locking doors, 10 minutes at a time in the middle of rounds when I had to, written notes and spoken to colleagues on the phone while pumping, and spent literally six hours at a patient’s bedside instead of pumping because they needed me there (needed to change my shirt after that one). I’ve rounded while miscarrying. I’ve spent Mother’s Day in the hospital on call, when my husband and son brought me dinner and flowers, which a nurse then threw away (I cried right in the middle of the floor). I spent my youngest son’s first Christmas in the hospital with my residents. I listened to my fellow residents tell stories about their post-call nights out with one another, as I went home to my little family. Being a doctor and a mother has been physically demanding, and sometimes intensely emotionally painful.

But...on those days when I come home sad and tired, with no greater wish than to pull my head into my shell and hide, I have little hands holding mine. When I want to be hard and keep the world out, I have three little people who need me to be soft. Their joy in discovering a new skill reminds me that even when things seem bleak, there is the possibility of growth. Their frustration with their inability to do the things they want to do reminds me that everyone wants control over their situation and giving it back can be the best medicine. Over and over again they teach me that nothing in life is perfect and that the most important you can do is show up and do your best. Being a woman and mother is not incidental to my doctoring but lies at the very core of it. I’m thankful that I’m a woman and a mother in a field which has been welcoming of what I bring to the table. And as the 7th doctor in my family and the first woman, I’m thankful for women like Dr Elizabeth Blackwell who blazed a trail that led me to this work and this life.

Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center (@DartmouthHitch) and @GeiselMed. She is also one of the moderators of #hpm chat.

Thursday, February 4, 2016 by Pallimed Editor ·

Wednesday, February 3, 2016

Advice to the Presidential Candidates on End-of-Life Care Issues

by Christian Sinclair

Tonight at the Democratic Town Hall, a New Hampshire voter, Mr Jim Kinhan asked a very important question of candidate Senator Hillary Clinton about care at the end-of-life and personal choices. While his question may not have been direct, gauging from Mr. Kinhan’s recent editorial in the Concord Monitor, it appears the focus of the question was intended to be about the challenging debate on physician assisted death. (Full Transcript here - Key Portion excerpted at the end of this post)
This can clearly be a vexing question for any presidential candidate in either party. So I’m here to offer my guidance and expertise on how to best answer this question that will actually do the greatest good for the greatest number of people.

Let’s look again at key points in Mr. Kinhan’s question to make sure we are addressing his concerns:
  • He accepts that his prognosis is limited, but notes that he is still active and functional.
  • He is open about his spiritual needs.
  • He is looking for leadership to advance the public discussion around personal health care choices.
  • He voices concerns not only for the patient but also the caregiver.
  • He wants life to be enhanced but also the end-of-life to have dignity.
So Democratic and Republican presidential candidates, here is how you can answer this question:


===BEGIN===

Thank you for sharing your personal story Mr. Kinhan. To see that a serious illness won’t prevent you from advocating for important issues is inspiring to me and I’m sure this whole auditorium.1[Applause]. You mentioned personal choices and dignity for those with advanced illness and a possible poor prognosis. Our health care system is designed to use the most advanced diagnostic tools and cutting-edge therapies. And while these can be very expensive even putting people into medical bankruptcy, we often fall short on providing the things that matter most to patients and their families.

One growing new area in healthcare finding ways to bring value and quality (and without staggering cost increases) is palliative care. You may not know very much about palliative care, but when Americans find out about it, over 90% want palliative care.2

A doctor, nurse, social worker, and as you mentioned spirituality3, a chaplain, and others are on your side; spending time with you; skilled in communicating tough issues; relieving your symptoms and helping support you and your family. But right now we only have 1 palliative care doctor for every 1,200 people with a serious illness. And we need more social workers, nurses, chaplains and others trained in this skilled care. In my presidency, I will work to increase training and research into making palliative care more accessible for all patients facing serious illness.

In addition, I will re-examine the limitations of the hospice benefit, which presents a tough choice about focusing on comfort only. What if you could have the dignity and support hospice brings without having to make one of the toughest decisions to forego potentially life-prolonging therapy?

And if we do those two things well, then we can really help the family caregivers who provide $470 billion worth of care. All of it unpaid. [Applause] We can give them back some of the dignity that illnesses like cancer and heart failure and Alzheimer’s rob from all of us.4

And as for the growing national debate on physician assisted suicide or as some call it aid-in-dying, states are grappling with this very issue, which highlights the importance of states rights to settle these difficult social questions.5 While I recognize there are surveys showing a majority of American’s support the ability to end their own life when facing a terminal illness, it is important to be cautious in opening new rights so we may protect those most vulnerable to abuse by those same rights.

While physician assisted dying laws are used by far less than 1% of people dying in states where it is legal, my job as president is to do the most good for the most people. That is why - to help 100% of people facing serious illness - I would want to fund more research and training into palliative care, re-examine the limitations on the hospice benefit, and figure out how we can better support family caregivers and patients so they have dignity throughout their illness and not just at the very end.

===END===

So there you go politicians. I tried to answer in a way that may fit your style and needs and still gets to the important issues. If you have a particular area you want to emphasize more with your base, I'm always available to talk to people about palliative care. Or I can direct you to many smart people who can do the same!

PS Politicians and advocates of palliative care also should support the Palliative Care and Hospice Education and Training Act (PCHETA) and check out the advocacy pages for the Center to Advance Palliative Care (CAPC) and the Hospice Action Network (HAN).

PPS More interesting background on Mr. Kinhan - "I'm not living with cancer, I'm walking with cancer." Concord Monitor video featuring Mr. Kinhan.

Christian Sinclair, MD, FAAHPM, is a palliative care doctor at the University of Kansas Medical Center, who was a committee member on the 2014 Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. He is also president-elect for the American Academy of Hospice and Palliative Medicine. He has no professional or private stance on physician assisted death. This piece is not representative of any of the above organizations and is his personal opinion.

1 - Let's make sure you are being human AND presidential. Empathize! And go for applause lines.
2 - Say it three times and make it stick!
3 - Callback to the original question. Show you're listening and this isn't a canned response.
4 - Everyone knows someone who has been an unpaid family caregiver. It's tough.
5 - Tried to do my best impression of a politician waffling here. 


Excerpt of CNN transcript: 
COOPER: I want you to meet Mr. Jim Kinhan (ph). He's a Democrat who says he is supporting you.

JIM KINHAN: Hello, Madam Secretary.

CLINTON: Thank you.

KINHAN: I'm very pleased to see you. This may come a little bit from right field, this may seem, but it's very personal to me and resonates probably with many other people who are elderly dealing with health issues. The question is coming to me as a person who is walking with colon cancer. And I'm walking with colon cancer with the word terminal very much in my vocabulary, comfortably and spiritually. But I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and -- their end of life with dignity.

CLINTON: Well, first of all, thank you for being here. Thank you so much for being part of this great New Hampshire primary process and thank you for support. And I really appreciate your asking the question. And I have to tell you, this is the first time I've been asked that question.

KINHAN: I -- I figured that.

CLINTON: Yes. I -- I really -- I really...

KINHAN: Maybe any candidate.

CLINTON: And I thank you for it, because we need to have a conversation in our country. There are states, as you know...

KINHAN: Yes.

CLINTON: -- that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals. But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective. So here's how I think about it. I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more...

KINHAN: Exactly.

CLINTON: -- often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses. So I don't have any easy or glib answer for you. I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been. Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw. So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

KINHAN: Thank you (INAUDIBLE).

Wednesday, February 3, 2016 by Christian Sinclair ·

Tuesday, February 2, 2016

End-of-Life Care around the World

by Ravindra Maharaj

A recent large study published in JAMA compared end-of-life practices for people with cancer in seven developed countries from 2010 to 2012: USA, Belgium, Canada, England, Germany, Norway and the Netherlands. The United States had the lowest proportion of in-hospital deaths and lowest number of days in the hospital in the last six months of life. Conversely, over 40% of patients who died from cancer were admitted to the intensive care unit (ICU) in the last 6 months of life (more than any other country in the study by a factor of two.) Something we have seen echoed in previous research.

Spending for end-of-life care in the hospital was high in the America but not as high as in Canada and Norway. It should be noted that in the figure shown that physician costs are not included in the US figure and therefore should be considered an underestimate.

Chemotherapy use was highest in Belgium followed by the US. The place of death seems to have shifted in the US away from the hospital as in the early 1980’s over 70% of patients with cancer died in the hospital and longer hospital stays were more common.

Besides all patients over 65 with any cancer, the researchers also looked at a targeted population of patients with lung cancer over age 65. The secondary analysis of this more similar group reinforced the patterns seen in the larger group with various cancer types.

Other commentary on this research can be found in the NY Times and Medscape. The article is not open access at this time.

Here are the topics:

T1: Are you surprised with the results of the study? If so, elaborate!
T2: How can the US centres reduce end of life hospitalisations and expense near end even further?
T3: What can other countries learn from the US practice? What can the US learn from the international community?
T4: Do you believe dying patients without cancer have similar outcomes?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/3/2015 - 9p ET/ 6p PT
Host: Dr. Ravi Mahraj 

 for up to date info.

Ravindra P. Maharaj, MD is a palliative care physician and lecturer at the University of the West Indies. He is, more importantly, a proud new father of a rambunctious little boy.

Image Credit: JAMA via fair use (education, critique). All rights reserved otherwise

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

You can find past #hpm chat transcripts and analytics on Symplur.


Tuesday, February 2, 2016 by Pallimed Editor ·

Monday, February 1, 2016

How Assumptions about Dying Can Negatively Affect Patient Care

by Lizzy Miles

"The only true wisdom is in knowing you know nothing." – Socrates 

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Having knowledge of our assumptions is a first step, but what do we do with that knowledge?  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This is the first in a series of articles where I will take each assumption and explore the concept in greater depth to include implications and possible interventions.

Assumption: If you have experienced a death, you know how death happens.

There is a bit of irony here, but it seems to me that the people who have only experienced a few deaths have a greater confidence that they “know” death.  It is not their fault, they don’t know what they don’t know.  As staff members, we can also sometimes become overly confident in our ability to predict how a patient’s dying process will go. I am guilty of this, but I have been proven wrong enough times to now know that nothing is certain except the eventual death itself.

Patients, caregivers and professional staff all can get caught up in assumptions. We will explore all three scenarios and the implications.

Patients

It is not uncommon for hospice patients to have expectations about their hospice journey based upon what they have witnessed before.  The patient’s prior experiences can affect everything from pain control to emotional responses.

Suggested Intervention: Ask the patient, “What has been your prior experience with someone dying?”

A personal note written by family member of the author more than 50 years ago
For some patients, they will give you prolific details about all of their prior experiences.  I had one gentleman who spent over an hour recounting in great detail the cancer diagnoses, health decline, and eventual deaths of several siblings.  Though I would have preferred to complete my assessment about his life, I realized that these experiences were what shaped his world view.  He had an extensive distrust of the medical system, and he expected to be cut off in conversation.  He was pleasantly surprised when I let him elaborate in extensive detail. Was what he told me relevant?  I determined it was, because I came understand that he saw himself as a caregiver and it was difficult for him to be the one who now needed care.  I also learned that he had witnessed some symptom management issues (albeit 30 years ago) and he had fears that his pain would not be controlled.  I informed the RN case manager of the patient’s concerns.

I had another patient who saw his mother die right after she received morphine. He assumed it was the morphine that killed her and refused medication despite great pain.

Asking the question about prior deaths will also inform you of the patient’s prior encounters with hospice.  The patient’s expectations are going to be based on what happened before. Was the prior experience positive?  If so, what did they find most helpful?  If the prior experience was not helpful, what happened?  The way the patient talks about other exposures to hospice will reveal what is important to them.  For some patients, it’s the educational component of what is happening.  For others, it may be the emotional support they received.

A patient who shares a negative perception of a prior loved one’s death related to poor symptom management gives the staff an enormous advantage to get it right for them this time.

Suffering is not inevitable.

Caregivers

Suggested Intervention: Ask the caregiver about their prior death experiences and then, “Is it your hope or expectation to be present at time of death?”

Depending on the patient’s condition, I may or may not ask the question about time of death on admission.  The appropriateness for this question depends in part on the patient’s diagnosis. There are some patients who come on to hospice with less than a week to live. It would be prudent to ask this of the caregiver so that WE don’t make assumptions that they do want to be present (that’s a whole different article). What’s relevant here is that if a caregiver has been present during time of death previously, it is going to shape their expectation.  A caregiver who had a particularly meaningful bedside experience with the family gathered around may assume that this death will be the same.  They may or may not be right. Every death is different and the current patient may not want people around.
A different caregiver had told me he was present with a loved one previously and because of that experience he knew he did not want to be present at his father’s death.

Caregivers can also make assumptions about the length of time it takes to die based upon their prior experience with a different loved one.  If the previous death was prolonged then they might assume this one will be as well.

Suggested Intervention: Acknowledge the prior experience the caregiver had and inform them of potential variations.


Hospice and Palliative Care Staff

It can be very easy for hospice and palliative care staff to make assumptions about death. Assumptions are not entirely awful, they allow us to anticipate symptoms and education the patients and families regarding the potential course of an illness.

Suggested Intervention: Examine your own assumptions about the dying process.


There is a fine line between establishing an aura of competence and brazenly asserting that which we do not know.

Where we can get into trouble is if we state what we believe with such certainty that it does not allow for exceptions.  Well-meaning hospice workers may convey to family the trajectory of actively dying to include mottling, unconsciousness, apnea.  All of these symptoms do happen, but not always.  Additionally, patients can have these symptoms, be incorrectly labeled as “actively dying” and then go on to live for weeks.  Caregivers hang on to every word we say regarding prognosis. We need to be careful we are not setting false expectations for a longer or shorter life expectancy.  Yet we also do not want to be so vague as to frustrate the caregiver with insufficient information.

Suggested Intervention:  Consider using the words, “typically” and “may” when you talk about what “might” happen.

There is also a fine line with humility and creating a sense of doubt.

Be careful about expressing “unknowingness.” I had one situation where I was called to sit with a distressed family in a facility while a patient was actively dying. The family was hypervigilant about the dying patient’s symptoms.  They asked me a question about one of the symptoms and repeated to me that the hospice nurse said, “I’ve never seen that before!” Unfortunately, the family interpreted the nurse’s statement as something was “wrong” even though the patient did not seem to be in distress.

Suggestion intervention: When asked a question that you cannot answer, say “I’m not sure” and inform the patient/caregiver that you will collaborate with the hospice team.


Every death is unique.  In order to provide the best care possible for the patient and families, we need to be assessing their assumptions as well as our own.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Monday, February 1, 2016 by Lizzy Miles ·

Monday, January 25, 2016

Meeting the Needs of Hospice Patients through Music Therapy

by Emily Olschki, MA, MT-BC

“Please check on James* in room 24,” the nurse said when I arrived on the unit. “He’s been anxious all day and we’ve got him with a 1:1 nurse. Katie’s with him now.” James was in his late 80s with dementia. He had come to our inpatient hospice the day before for symptom management after his increasing restlessness led to him falling repeatedly at his assisted living facility.

James was fidgeting in his wheelchair with his head drooped down and his brow furrowed. As I sat down and got out my guitar, I watched Katie cue him to stay seated. He picked up his head and nodded when I asked questions to determine the music he liked – big band and jazz. I started with an upbeat song that matched his restless state then gradually slowed down the tempo as I moved to other songs. When he tried to stand, we’d remind him to sit and listen to the music.

As I continued to play, he began to rock gently back and forth to the beat for short stretches and his face relaxed. Katie slipped away to attend IDT. After several minutes, James closed his eyes and rested back in his wheelchair for a minute. I paused my singing to see if he was ready to rest, but he began fidgeting with the arms of his wheelchair again. I started another string of songs, beginning with a slow ballad from the 40s, and he sat back again and gradually dozed off. Katie returned and James opened his eyes.

“James, are you ready to take a nap?” she asked. He nodded and calmly let her help him into his bed.

Music therapy worked in conjunction with medical interventions to decrease James’ restlessness and maintain his safety that morning. Trained music therapists may also work with hospice and palliative care patients to:
  • Increase self-expression, emotional processing, and life review as patients reflect on significant songs and their meanings or engage in music-making
  • Create positive memories with and leave legacies for their loved ones through songwriting, videos, letters, and in-the-moment interactions
  • Increase physical comfort by addressing pain, agitation, and shortness of breath
  • Help patients and families process anticipatory grief and say goodbye
  • Improve quality of life through emotional and spiritual support, decreased isolation, and connection with interests
Join us for the #hpm chat on Wednesday, January 27 at 9 pm EST to discuss music therapy in hospice and palliative care settings.

Chat questions:

  • T1. What have your experiences been with music therapists in your health care org?
  • T2. What do you see as the barriers to accessing MT in health care settings? How do we overcome?
  • T3. Qualitative research in MT has shown that MT can increase self-expression (Gordon and Clements-Cortes, 2013), family bonding (Savage and Taylor, 2013), and QOL (Hilliard, 2003). What future research would help MT implementation in more #hpm programs?

Emily Olschki, MA, MT-BC (@EOlschki) is a board-certified music therapist working with adult and pediatric patients at Kansas City Hospice and Palliative Care.

*Names, ages and details changed to protect patient privacy.

Image credit: Kylie Hinde - Music therapist - by Conor Ashleigh for AusAID via CC BY 2.0 

Helpful links:

Gordon, M., Clements-Cortes, A. (2013). Music at the end of life: bringing comfort and saying goodbye through song and story. Annals of Long-Term Care: Clinical Care and Aging, 21(11), 24-29.

Setting The Record Straight: What MT is and Is Not from the American Music Therapy Association

Music Therapy Posts on Pallimed

Monday, January 25, 2016 by Christian Sinclair ·

Wednesday, January 20, 2016

JAMA Issue Dedicated to End-of-Life Issues This Week

by Christian Sinclair

This week's JAMA is focused on end-of-life care with topics ranging from hospice, ICU, POLST, how doctors die, physician-assisted death and more. Our plan is to take some time and review this issue and bring you analysis from your fellow clinicians. If anyone is interested in helping write a review of any part of this issue, please contact editor@pallimed.org with the article you would like to focus on.

We start with an analysis of the two research letters that look into the anecdotal claims that doctors choose different goals at the end-of-life and therefore die differently than the general population. Popularized by a 2011 essay "How Doctors Die" by Dr. Ken Murray, and shared widely on social media, it is good to see research to match with the stories we may hear.

Keep an eye on this space in the next several days as we post more pieces.


Christian Sinclair, MD, FAAHPM is editor of Pallimed and president-elect for the American Academy of Hospice and Palliative Medicine. He sees patients at the University of Kansas Medical Center in Kansas City, KS.

Image credit: JAMA Cover for Jan 19, 2016

Wednesday, January 20, 2016 by Christian Sinclair ·

Maybe Doctors Don't Die Differently Than Everyone Else

by Christian Sinclair

If you are in health care, chance are you have come across the essay "How Doctors Die" by Dr. Ken Murray.* If you have not, then you should go read it, because the anecdote likely will resonate if you are an advocate for hospice and palliative care. Essentially, the key point is physicians see so much suffering from unhelpful medical treatments near the end of life for patients, that when a physician encounters a life-limiting illness, they will often forego minimally beneficial treatments.

It makes sense right? As a palliative care doctor, I could imagine myself following a similar path, but what does the research show? Are doctors really in lockstep on this issue? Reflecting on this issue and what I have seen in my peers, everyone seems to agree with this essay when they send it to me, but is that just a confirmation bias? Thankfully more information is emerging to help test this anecdote with data.

This week in JAMA, two research letters examine the locations of death and the intensity of end-of-life care for physicians compared to the general public. In the "Association of occupation as a physician with likelihood of dying in a hospital," Blecker et al, used the National Longitudinal Mortality Study (based on US Census records) to examine nearly 500,000 decedents from 1979 to 2011. The outcome was location of death for four divided groups (physicians, other health professionals, other higher education, all others).

For the total population (over these 30 years), about 40% of people died in a hospital and 72% in any facility (including hospitals.)** Knowing that baseline, and 'knowing' that doctors die differently, what percentages would you guess for physicans? 20% and 50%? 30% and 60%? 38% and 63%? If you guessed the last one you would be right. Compared to all others doctors are less likely to die in a hospital than the 'all others' category (38.3% vs 40.4%, Adj Odds Ratio 1.10). For death in any facility doctors will also be less likely than 'all others' (63.3% vs 72.4%, Adj Odds Ratio 1.34).

Now those numbers are statistically significant, but they do not seem to explain the anecdote quite well. One could make up a number of arguments that could support data like this, which would not include doctors choose less aggressive care at the end of life.

The second letter by Joel Weissman et al, looked at end-of-life resource utilization of Medicare beneficiaries in four states, and compared physicians, lawyers, and the general population. Why physicians and lawyers? Well it isn't about a good joke, it is because they were thought to be similar in education and socioeconomic status. This study is a little bit more telling than the first. The outcomes measured from Medicare claims data was utilization in the last six months of life: surgery, hospice, ICU, hospital death, and expenditures. In 3 out 5 measures (hospital death, surgery, ICU) the physician group leaned towards less health care utilization, but again not by much. The lawyer group was pretty similar to the general population. Interestingly, hospice utilization was not different among the three groups and centered around 45%.***

So after seeing all of this, can we conclude that doctors die differently than everyone else? The statistics are significant, but not really overwhelming. It really isn't a strong enough difference that I would feel compelled to keep the "How Doctors Die" essay as a hallmark of strong differences. Until there is stronger research tying any of this data to the decisions that doctors make, the best I can put my conclusion is: doctors die slightly differently than everyone else, statistically speaking.

*Wouldn't similar rationale hold for nurses to also make different choices at the end-of-life? One study looks at it, but lumps nurses in with many other health professions with less exposure at end-of-life.
**Those numbers have shifted over time as the 2013 Teno Medicare study showed 25% for Medicare decedents in 2009 died in a hospital.
*** Still so many people who die without the support of hospice, it still surprises me.

Christian Sinclair, MD, FAAHPM is the editor of Pallimed, president-elect of the American Academy of Hospice and Palliative Medicine, and a palliative care doctor at the University of Kansas Medical Center.

by Christian Sinclair ·

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