Maintaining Relationships: Stop Using the Words ‘Terminal’, ‘Dying’, ‘Hospice’, ‘Advance Directives’ and ‘Bereavement’ that Push Others Away
The best learning experiences for me have been times when I come away questioning core assumptions about the work I/we do. As palliative care folks, we try to help people understand where they are in relation to their disease and what their hopes and goals are for care. We offer treatments and resources to match those needs through, in part, supportive communication. What if, in our kind, well-meaning communication, we actually hurt or push away the very people we purport to serve? We may then feel misunderstood, even angry. (Sound like a relationship you’ve had?)
Diane Meier, MD gave an update on March 4th at the HPNA/AAHPM annual meeting entitled “Update on National Palliative Care News: How the Big Picture Affects You.” It was an enlightening, exciting, distressing update and call to action for the palliative care community. She made too many important points to discuss here, so let me pick one.
The new (to me) hot word in the political arena is “optics”. It’s all about how you see things - perception. Perception is in the eye of the audience. (Kind of like pain or shortness of breath is what the patient says it is.) We want and NEED to have a relationship with our patients and families who are part of the general public. We need them to perceive us as helpful and valuable both to serve them and to promote our vision of a holistic health care environment that matches patients’ preferences with appropriate care. So why do our patients/families, through the media and through our work, often NOT see us as helpful and valuable, but, as my son once proclaimed me, as “The Mistress of Death”? What, we must ask if we want to sustain a future in this relationship, is our part?
Dr. Meier observed that we use language that associates palliative care with dying. Consistently. Language is important. Language creates perceptions and (may) define our relationships with the people we care about most. Consider that the tiny line in the proposed health care bill allowing physicians to be reimbursed for having a conversation every 5 years with their patients about advance directives DIED because of optics. It was perceived (used, twisted, misconstrued) by a few clever politicians that physicians were going to talk about dying and (logically, of course) talk people into dying. They quickly conveyed this idea to the general population, OUR audience – our audience who votes. Language. Optics.
Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.
Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?
On the other hand, if these words cause others to retreat from our services, how does it serve either of us? Does rubbing someone’s nose in something we feel is important make them want to be our friends? Probably not.
OK, let’s go back to our part in this relationship. In any relationship, intimate or professional, we make compromises. We decide how much we are willing to compromise to maintain the relationship and how much to hold our ground lest we lose our integrity, our selves. Like good palliative care folks, we must ask ourselves, what are the perceived benefits and anticipated risks?
Everywhere we merge the terms hospice and palliative care. Even our national organizations merge the words: Hospice and Palliative Nurses Association, American Academy of Hospice and Palliative Care Physicians, The National Hospice and Palliative Care Organization. Yet hospice care is a subset of care for the dying which is a subset of palliative care. If we really want to separate the perception that palliative care is about dying, do we need to have separate national organizations? Separate certification and educational programs? Do we need to rename palliative care “supportive care”? This may seem outrageous to some. But we must ask, what are OUR goals? I certainly don’t have the answers, but I think the questions are really important.
Comments
The more I think about it, the more I think I disagree with them. It feels like the only reason to stop talking openly about death is so we can improve the chances of getting increased reimbursement/political support for palliative care. Just because Sarah Palin is uncomfortable with death ('death = bad' is written on her hand) doesn't mean we have to be.
This is tough, but this is the challenge of the human condition right?
1. I think the problem is that most of our referral sources still think that Palliative Care is End-of-Life Care and mostly refer at this time. Am I going to deny a referral for a patient that is uncomfortable and actively dying? By no means! Unfortunately, this perpetuates the belief, because all other physicians and ancillary staff see us taking care of the patient at End-of-Life. We all know physicians are hard to educate! So we have educated all the staff and have had several CME's to educate the physicians. I think that as our educational system and exposure to Palliative Care increases through medical school and residency we will see the transition move upstream by getting the referrals closer to the time of diagnosis rather than in the end stages of the patients illness.
2. Once we get these referrals closer to the time of diagnosis, then an appropriate hand-off can be done to hospice for End-of-Life Care.
3. I agree with Dan Matlock. We shouldn't stop being frank and open with our patients in talking about death. We are the experts and know how to have open and honest discussions with patients. Just as I am not the person to talk about organ donation, other physicians should defer to us if not comfortable with these discussions.
4.
a. Palliative Care = Palliative Care, a transdisciplinary and holistic approach to the patient addressing the domains of the physical, psychological, spiritual and social.
b. Supportive Care = Care directed at good symptom control to allow the patient to be comfortable and have improved quality of life. No other team members mentioned in all definitions except for medical providers to make sure this happens. Many oncologist provide good Supportive Care.
c. Supportive Care (aka Palliative Care) = The type of Care that is really Palliative Care, but disguised using the term Supportive Care as not to offend the referring physicians and to hopefully increase referrals. Realistically if Palliative Care didn't raise the eyebrows of physicians, I doubt we'd be calling it Supportive Care.
Diane Meier is brilliant and compelling. Along the lines of your post, my favorite lines from her talk were:
1. The EOL care paradox: Minimizing palliative care's connection with dying will increase the patients chances of dying a high quality death.
2. If we want to help patients and families we cannot first expect them to accept they are dying.
3. The Woody Allen quote "I don't want to achieve immortality through my work, I'd rather achieve it by not dying."
4. Use of the words "EOL, dying, and bereavement language renders our services irrelevant and threatening to 95% of people who want it most.
I also don't think she was suggesting that we take the dying out of palliative care. Caring for dying patients and end-of-life care is a core part of what we do to help patients. The first part of her talk, where she mentioned Joan Teno's work on care at the EOL, and a JAMA piece about what people want at the EOL, are evidence that she does believe this work is important for our field. The issue is how we communicate with others - our peers, our patients and families, and our funders - including congress. We need to be more sophisticated about the language that we use. This is not about being dishonest - it's a pragmatic approach to helping people who don't want to think about dying. That's just about everyone.
Do we have a "branding" problem? Does the term "palliative care" already mean "death squad" in your institution? I think she's right, we do. We are so much more than that. When Balfore Mount coined the term palliative care - in the shower, if rumors are true, where all good ideas occur - I'm sure he had no idea what it would come to connote.
I talked about changing the name of palliative care to supportive care with Susan Block at one point, and she said that if we changed the name, the new name would eventually take on the connotations of the old.
This issue is fascinating and complex. The tensions this raises and the discussion is good for our field. Thank you for bringing it up Patrice.
The history of palliative care is an interesting case of the importance of language. The term may have originated with Balfour Mount, but the practice of easing the pain of the dying was common in the 19th century as morphine (1806), codeine (1836), and aspirin (1892), along with the anesthetics chloroform and ether, were added to laudanum (17th century) in the doctor’s black bag. At a time when physicians had very little to offer patients by way of effective cures (a time of bloodletting and purges), it was palliative care that made physicians welcome at the deathbed.
At that time the practice was not called palliative care. It was called … euthanasia, or outward (vs. spiritual) euthanasia -- literally, a good death. In 1870, however, a school teacher named Samuel Williams published an essay in which he used the term euthanasia to mean mercy killing. The essay generated considerable interest and discussion. To make a long story short, the original meaning of the term euthanasia was completely lost.
Between these late 19th century discussions of euthanasia and Balfour Mount in 1975, there was no name for supportive care of the dying. Without a name, there could be no specialists, no professors, no training. There was little discussion of the subject in medical schools. There could be no advancement of knowledge and technique. Without a name, the subject could not be indexed and researched in medical literature.
I’ve been meaning to write a post or two on this subject. What we now call palliative care greatly enhanced the reputation of the medical profession in the late 19th century. Why was the original meaning of “euthanasia” so easily displaced? Ezekiel Emanuel (Rahm’s brother) suggests it has to do with the ideals of individualism at this particular moment in the development of capitalism.
Too bad for me that I missed Diane Meier's presentation, and, for that matter, the entire conference. I was busy running around the hospital convincing co-workers that palliative care is not just for people with systolic BPs of less than 40.
Weighing in after yet another day of FCO*, I've these thoughts:
1 - 'Palliative' is a dumb word. Mr. Mount must have been late on his hot water payments. So, how about we go ahead and change it to 'Smart People's' Care.
2 - I've found it helpful to hiccup instead of saying the word 'dying.' The reaction is the same (sudden silence and bewilderment) but at least I didn't really say it.
3 - In my experience, perception, or optics, truly is reality. Especially when the estranged daughter of an intubated 87 y.o. end-stage COPD patient with acute-on-chronic renal failure and multiple new lytic lesions perceives that mom is a 'tough old bird' and would most definitely want to be trached and pegged.
4 - The term "End-of-Life" is unusual and can be intimidating. Let's take the punch out of it by using it more often. Practice saying things like "I'd rather end-of-life than take another statistics course", or maybe "that leather purse is to end-of-life for!", or, "I'm soooo end-of-lifing to go to Italy before airfares go up again!".
5 - Any ideas for something less ambiguous than the term "Advance Directives"? Do you think it might be better if we asked our patients if they've completed their "Regression Initiatives"? What are your thoughts on changing it to something more practical like "Deathbed Desires", or "Really Important Requests", or "When All Else Fails, Ask My Estranged Daughter What She Thinks You Should Do To Me, And Don't Use Words Like Helpful or Best Interest or Comfort".....
Okay, you're right, I need a vacation. But do keep up the blogging, so I'll have material to read on the beach.
And - thanks for the forum. I love you guys.
*Futile Care Overload
Examples: 20+ years ago, the families of Karen Ann Quinlan and Nancy Cruzan had to go to the supreme court to get doctors to stop doing things - today, the situation is often the reverse. In medical school, I received a large amount of education about palliative care (thanks to Dan Johnson and Jean Kutner) - soemthing that didn't happen years earlier.
Also, we do a poor job amplifying the stories of the patients who truly appreciated an honest discussion of death. How many institutions have received donations from families who apprecited the work of palliative care?
We could use some branding but we shouldn't deny our foundation and one of the keys of our foundation is being comfortable with death and dying.
I've especially seen diff. terminology being used in Pediatric Palliative Care (a very sensitive area--the terror associated with admitting your child is going to die is powerful)
Butterfly Team, New Bridges, Kid's Path, Comfort Team...
Some people need to learn these hard to hear things in steps. If we can find terms to get us in the door and then expand from there...that could be very useful.
But, if we just replace the term Palliative Care with a new word, then that will get the "death team" label attached to it, too.
Not any easy answers here.
As leaders in the field (and there are many others), they make us think, sort out, and discuss new concepts in the field.
That being said, let me tell you that my experience at the grass roots level, meaning the nurses, social workers, chaplains, therapists, counselors, etc. in all venues of providing care, are JUST coming to terms with the concept that palliative care can be given for years before the patient is close to death. And the concept that palliative care means that at this point in time, certain diseases cannot be cured. There is always hope on the horizon, and a new intervention can happen at any time, but that is the current meaning.
Trust me - when I take questions from the attendees, they are still sorting that out. I can't imagine changing the terms and meaning again, to add more confusion. Clarity is important. Not dancing around the facts is important. Being skillful in presenting the truth is important. Because the bottom line is this: allow each patient the gift of knowing what they need to know so they can spend the hours, minutes, and seconds of their remaining days in the way they choose.
I am reminded of a favorite family member, my best and funniest uncle, who was told about his stage 3 bowel cancer. That very Christmas he bought video cameras for all his kids because he thought it was his last Christmas. Then he lived 5 more Christmases and joked about the fact that if he knew he was going to live that long, he could have saved a lot of money! He never lost his sense of humor, continued with palliative chemo, and treatment for wounds that eventually were open, and maximized every day he had. When he was dying, I asked his wife if they had said everything they ever wanted to say to each other and to the children, and she said "Oh yes, we've had several years to do that, and we did. We are all ready for him to be at peace."