Friday, October 14, 2011

Take the "H" out of AAHPM/HPNA? Let's Discuss.

Should the word "hospice" be taken out of the professional society names: "American Academy of Hospice and Palliative Medicine," and "Hospice and Palliative Nurses Association?"  AAHPM would become AAPM.  HPNA would become PNA.

This idea is completely new to me so I don't feel informed enough to give an opinion yet.  Let me present some of the arguments as I understand them.   I'll start with reasons for keeping the H.

Reasons to keep the H:

  • Palliative medicine grew out of the hospice movement in the US.  There are strong historical reasons to recognize the powerful role of hospice in nurturing palliative medicine.  There is no need to shoot hospice in the foot.
  • Many people in these professional societies work for a hospice.  Many identify as a "hospice" provider first and foremost.  They may not feel included in an organization that did not include the name hospice in the title.  Perhaps they would splinter.
  • Hospice is distinct from palliative medicine, and should be recognized as such by having its own portion of the title.
  • Even if you believe hospice is subset, there are plenty of names of palliative medicine services at respected institutions that similarly join a subset of palliative medicine to palliative medicine: "Pain and Palliative Care Team" "Palliative and Symptom Management Service" "Palliative and Supportive Care."  As if palliative medicine does not include attention to pain, symptoms, or supportive care.  These names clue people in - after all, most have no idea what palliative care means.  We live in a world that doesn't always make sense, why should the name? 

Reasons to drop the H:

  • Hospice is a subset of palliative medicine.  Having both in the title implies that they are distinct.  This is misleading.  Talking about hospice and palliative medicine is like talking about apples and fruit.
  • Palliative medicine is trying to distinguish itself as a specialty open to all persons with serious illness, regardless of stage, treatment goals, or receipt of concurrent life-prolonging treatments.  Hospice is end-of-life care (6 month prognosis requirement, median hospice length of stay ~2 weeks, public perception).  Having hospice in the title implies by association that palliative medicine is also about only end-of-life care.  This shoots palliative medicine in the foot with politicians, funders, patients and their families.
  • Dropping the word hospice would free current "hospice" providers to provide care for patients with a prognosis of more than 6 months.  By identifying as "palliative medicine" providers instead, they actually open up new practice opportunities and potentially more expansive roles.

Please add your thoughts and all of the many arguments I'm missing in the comments. As always, it's fine to be passionate as long as we're respectful.  Let's discuss.

by: Alex Smith

16 comments:

Practitioner Solutions said...

It speaks volumes about discomfort with end of life topics and an effort by clinicians to distance themselves from difficult topics and allusions to the end of life if this community were to remove hospice from HPM. I'm thinking we need to shift from compartmentalizing healthcare in this way as death and dying is a part of any thought process related to any illness no matter how minor it may seem. Talking about end of life, planning, goals of care & the patient's philosophy occurs when we put the subject matter in front of patients and provide the opportunity for a discussion. Those who have difficulty approaching the subject might benefit from taking the stance that we routinely discuss end of life wishes as a matter of course regardless of whether we believe it is relevant to the current situation. We perpetuate a collective "denial" situation by not learning the expertise needed to discuss hospice and end of life topics. Over the next 20 years, with the aging baby boomers, perhaps many clinicians will acquire the skills & "hospice" will not be such a controversial word. Let me know if I can help in any way!

Ron Crossno said...

This topic arises from time to time, and when it does, it fosters thought-provoking comments and a diversity of opinions. Personally, I look forward to seeing what others have to say. However, I do want to clarify that AAHPM has no plans, nor is it considering plans, to drop the "H" from its name.

Ron Crossno, MD FAAHPM
President, AAHPM

TIM COUSOUNIS said...

Alex,

You have neatly and concisely laid out compelling reasons on both sides of this issue.

Some say this is merely a matter of semantics, so why bother? I'd like to offer my thoughts, as someone who has been involved with "hospice" since the mid-80s.

The reason why this is an important issue is quite simply because it matters to the public. It matters because use of the terms together suggests to some that they are synonomous, and to others that they are distinct. Therein lies the confusion.

In its earlier days, hospice described a concept of care. Over the past quarter-century (once hospice became covered by Medicare as a benefit), it has come to describe (define?) an organized and highly prescribed system through which end-of-life services are provided. The practitioners of these services have taken on, perhaps out of convenience, the name of hospice into their titles.
It's analogous to surgeons describing themselves as Operating Room and Surgical Medicine physicians, or ER docs referring to their specialty as Hospital and Emergency Medicine. I'm sure you could think of other analogies.

Those receiving palliative care do so in many settings (home, hospital, SNF, outpatient office, assisted living, hospice inpatient unit) while utilizing various health benefits/coverages (of course the hospice benefit but also home health benefit, physician services)to pay for these palliative services. In other words, palliative care is provided by a host of professionals to patients during "late-life". Some, but certainly not all) of these patients use the hospice benefit (provided by Medicare and most private health insurance plans)to cover the cost of palliative care.

The question we in the field should be asking is how we can best increase access to palliative care. If some of that palliative care is provided by a licensed hospice, reimbursed by the hospice benefit, all the better. If some of the care is provided by a hospital, or a SNF, reimbursed by the physician services benefit, all to the good.
But let's start now to clear up the confusion, or it will be many more years before palliative care fulfills its potential to transform late-life care.

Marian Grant said...

A key finding of the recent CAPC public awareness research is that "palliative care must be differentiated from hospice or end-of-life care. Focus group respondents became confused about the meaning of palliative care when (these) terms were introduced into the definition of palliative care."

Given this data, and my own experience as a palliative care consultant in a large academic center, I think we will have better success getting access to palliative care for our patients and families by making it the umbrella term and separately discussing hospice as an aspect of palliative care when end of life is near.

However, having participated in a similar debate at HPNA, I recognize that those of our colleagues who work primarily in hospice were alarmed and upset over the prospect of removing "hospice".

ken covinsky said...

Tim has raised a perspective on this issue that I have not quite thought of before.

In the public mind and payer mind, is hospice defined by the Medicare Hospice Benefit? If so, is it good to have the field defined (and restricted) by insurers and legislation? I dont think any other field of medicine is defined this way. It seems that if the field allows hospice to be defined by the coverage decision of the moment, it could have restrictive effects on the development and propogation of hospice.

Charles F. von Gunten, MD, PhD said...

Throughout the rest of the world,the term palliative medicine is used to describe the physician subspecialty, palliative care the interdisciplinary work, and a hospice is an inpatient unit where palliative care is practiced for patients near the end of life. The first 'change' in meaning in the US from other countries was using the word hospice to include care at home. Interestingly, despite 30 years, the public still thinks of hospice care as a 'place to go to die' which is still true. Most hospice units in the US have 60-80% of their patients die during their first admission. In Canada, where there where Hospice is primarily a volunteer/non-professional home care organization or inatpient unit and palliative care grew out of hospital-based teams, a national consensus project that started thinking the 2 were 'very different' decided they were the same;hence it is always called hospice palliative care as one of those uniquely francoenglish conjunctions commonly seen in Canada.

Charles von Gunten, MD, PhD

Todd Hultman said...

HPNA appreciates the richness of discussion on this topic. Given the ongoing national dialog on health care and the need for further education with the general public, HPNA recognizes the importance of open discourse. However, at this time, HPNA is not considering any change in the name of our nursing society.
Sincerely,
Todd Hultman, Ph. D., ACNP, ACHPN
President, Board of Directors
Hospice and Palliative Nurses Association.

Karen Contreras, RN said...

Is there a strong national organization and presence to support hospice care if the word "hospice' is removed? If not, then the timing may be premature. If there are strong opinions about separating the two areas then,perhaps, we could continue educating the public about palliative care and encourage hospice care to strengthen the foundational understanding of the services they provide. At some point in the future, both areas of care may be independently strong and effective champions for symptom management and end-of-life care.

Rita Wickham said...

tomato...tomato...I say, don't change the name. It will not change perceptions of physicians and nurses (in general) to be so acutely uncomfortable with either word - palliative care or hospice - that suggests an individual might die. We should be opening up opportunities to talk about these in order to eventuate change in current dominant medical model, and to help us as HCPs provide life-long care. I agree (and we tried to incorporate the idea into an interdisciplinary course in palliative care at Rush U) that we need to normalize this part of a values assessment that we incorporate with all new patients, and that we continue discussions over time. Besides, some of my oncology colleagues thought we shouldn't call ours the "Palliative Care Service" - one of them found palliation to be a "depressing" word!!??

home care charlotte nc said...

You do a good job playing devils advocate here. This is definitely a interesting debate.. but I agree with what was said earlier.. I don't see this change happening anytime soon.

Shreda Paire, MS, RN, FNP-C, ACHPN said...

As a palliative care NP who worked as a hospice nurse in the past, I feel that I have a good understanding of both sides of the discussion.

People who work in hospice often do feel very passionate about the work that they do and discussion about name change can evoke much discomfort. As a palliative clinician, I also see how difficult it can be for colleagues to refer if either the referring colleague or the patient thinks that palliative care=hospice=death. That fear and the misunderstanding about what we do often prevents referrals, delays care and causes confusion about how we can help.

Diane Meier, MD of CAPC has brought up this delicate issue after spending a year in Washington, where she learned that a name change might bring us forward since she learned that our name=death and death doesn't sell. For many in our community, this is an emotionally loaded idea.

I, too, was present at the annual HPNA meeting that Marian mentioned when there was a discussion of removing the word hospice from HPNA's mission statement. The meeting quickly became divided, split between palliative care and hospice members. Some nurses seemed to feel left out or disrespected and things were said that caused division, hurt feelings and many disgruntled members. The meeting was one that many of us will not soon forget. Luckily, it seems members were able to work through this but it was a very passionate and emotional topic.

Even a discussion in this format may lead to people believing that it being considered and we have to be careful that it is not misunderstood as being an actual current issue. I believe that we need to have the power of a unified group and if discussions such as these alienate members, they might splinter off and that may not serve our mutual purposes. Respectful consideration of such emotional subjects is necessary to maintain our group and if we aren't considering a name change, we should be careful in posting things that seem to suggest that. I am afraid it will be misunderstood by those that don't take the time to see that this is simply a discussion, not a reality!

For the record, I believe as Diane Meier does, if we need to change our name to reach out in a nonthreatening way to get to patients, then so be it. I don't mind calling myself something different if it will allow me to get to the bedside of those who need me. We will always have those who do not want to die and will not select the "death" option. We can't assume the general public will be as comfortable as we think that we are with the idea of death. Haven't we all seen that even those who work in palliative medicine who get sick, or have ill family members, often resist hospice or palliative care because of what it means? We can't blame anyone for their fear of death, it is a deep fear and can be outside of our conscious control. We must remember to be gentle with our colleagues and ourselves for such emotional charged issues but it is also good to discuss ways to overcome issues that prevent us from getting to the patients that need our help.

Patrice Villars said...

NP Paire addresses some very important issues, particularly for nurses. I have a very similar work background as NP Paire. As a larger HPC community we struggle with the historical tension between the hospice community (mostly nurses and social workers) and Palliative medicine (mostly MDs and APNs). Many hospice nurses have been doing palliative end of life work called “hospice” for over 30 years and want to be acknowleged for their pioneering work in this country to change the culture in which people are treated as the approach death. Many see the Palliative care community defining themselves primarily (sometimes exclusively) as physician based palliative medicine. As while we all embrace the broader definition of palliative care as distinct from hospice, hospice (by government as it is) is a strong and vital component of all of our work. These are emotional issues that are often sometimes triggered by comments that imply palliative medicine is a physician subspecialty without mention of its interdisciplinary nature. A recent example was the AAHPM video released in February 2011. (Passionate and wide ranging points of view are expressed in the comment section.) Like NP Paire, CAPC and Diane Meier, I agree that we need to find language best serves our community – patients, familes, and policy makers alike. Similar issues have been discussed in prior a Geripal post here.

Patrice Villars said...

(now with hyperlinks)


NP Paire addresses some very important issues, particularly for nurses. I have a very similar work background as NP Paire. As a larger HPC community we struggle with the historical tension between the hospice community (mostly nurses and social workers) and Palliative medicine (mostly MDs and APNs). Many hospice nurses have been doing palliative end of life work called “hospice” for over 30 years and want to be acknowleged for their pioneering work in this country to change the culture in which people are treated as the approach death. Many see the Palliative care community defining themselves primarily (sometimes exclusively) as physician based palliative medicine. As while we all embrace the broader definition of palliative care as distinct from hospice, hospice (by government as it is) is a strong and vital component of all of our work. These are emotional issues that are often sometimes triggered by comments that imply palliative medicine is a physician subspecialty without mention of its interdisciplinary nature. A recent example was the AAHPM video released in February 2011. (Passionate and wide ranging points of view are expressed in the comment section.) Like NP Paire, CAPC and Diane Meier, I agree that we need to find language best serves our community – patients, familes, and policy makers alike. Similar issues have been discussed in prior a Geripal post here.

janet bull said...

Appreciate the comments that have been expressed. No question that policy makers don’t like the hospice word or discussions around death and dying. That being said, crafting our message devoid of hospice adds to the death denying culture that is a reality in our country. Many in our field see themselves as both hospice and palliative care clinicians, not making a significant distinction between the two, and many hospice organizations fund palliative care programs both in the inpatient and outpatient setting. Board certification requires expertise in both hospice and palliative care. I am concerned that stripping the “hospice” out of the name will cause alienation and disharmony in our field. I also worry that this is not good for the public, as they need to be educated about hospice and how it is not just “brink of death care”.

Fredrick said...

Here some say this is merely a matter of semantics, so why bother? I'd like to offer my thoughts, as someone who has been involved with "hospice" since the mid-80s.but I'm thinking we need to shift from compartmentalizing healthcare in this way as death and dying is a part of any thought process related to any illness no matter how minor it may seem. Talking about end of life, planning, goals of care & the patient's philosophy occurs when we put the subject matter in front of patients and provide the opportunity for a discussion. Those who have difficulty approaching the subject might benefit from taking the stance that we routinely discuss end of life wishes as a matter of course regardless of whether we believe it is relevant to the current situation. We perpetuate a collective "denial" situation by not learning the expertise needed to discuss hospice and end of life topics. Over the next 20 years, with the aging baby boomers, perhaps many clinicians will acquire the skills & "hospice" will not be such a controversial word. Let me know if I can help in any way!Hope you will agreee, Thanks

David L. Sharp, M.D. said...

As a family doc now in my 42nd year of practice, I find all of this somewhat amusing. GOOD, COMPREHENSIVE family medicine incorporates obstetrics (the beginning of life), hospital care (and the decisions surrounding acute and chronic illness) and care during patients' waning years. Knowing your patients over time facilitates end-of-life discussions and rational, cost-effective decision-making. Family Practice/Medicine, having traded comprehensive medical care for improved "provider" lifestyles, has made room for others to "specialize" in serious-illness care (palliative medicine) and symptom management at the end of life (hospice medicine).
It's all one spectrum of living and should be one spectrum of healthcare.
I'm board-certified in both Family Medicine and Hospice and Palliative Medicine.
Keep "HOSPICE" in the name. It helps us face reality.