My dad died of congestive heart failure in 2009. The last weeks of his life weren’t what they could have been had we known enough to get him into hospice care. But we didn’t know, and I’ve felt ashamed about that.
If we had it to do over again things would be very different. We’d have brought him home much sooner, made him comfortable, helped him work through a life review, hung out with him, heard and said some things that needed to be heard and said.
As it was we only managed to bring him home for his last day. It was better than not bringing him home at all, but not much better, at least not for him. For us, though, it was transformative. Two generations of our family — my wife and I, our children — had never seen the kind of death that was normal until the modern era. We’d didn’t know why or how to shift gears from medical treatment to palliative care. Now we do and we’re deeply changed — Luann especially. She’s become a hospice volunteer who comforts the dying, supports their families, and counsels survivors.
From her I’ve learned a lot about hospice care. What happened to us, it turns out, is typical. Many people don’t realize how comfortable a dying person can often be at home with proper medication. As a result many delay until the bitter end, and miss out on the emotional and psychological richness that’s possible in a home hospice setting.
A big reason for the delay is the chasm that divides the culture of hospitals from the culture of hospice. Nobody in the hospital advised us to bring dad home a month before he died. A social worker mentioned it, but dad didn’t know what it could mean to make that choice, we didn’t know enough to advocate for it, and medical professionals speak with vastly more authority than do social workers in our current regime.
What hospitals don’t know about hospice is astonishing. Last night, while reading an anthology of science writing, I happened on an essay by Atul Gawande, a physician/writer who, like Oliver Sacks, Perri Klass, and Abraham Verghese, opens windows into the medical world. In 2010, the year after our experience with my dad, he wrote a New Yorker piece called Letting Go that included these revelations:
One Friday morning this spring, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operates. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet street in Boston’s Mattapan neighborhood
And:
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months.
These things once surprised me too. Now, thanks to our brief hospice experience with dad and Luann’s volunteer work since, I take them for granted. And while I’ve felt ashamed not to have arrived at this understanding sooner, in time to help dad, I guess I should cut myself some slack. Atul Gawande didn’t get there any sooner than me.
How could that be? How could a leading medical practitioner (and explainer) reach mid-career lacking such basic and useful knowledge? All too easily when we carve the world into fields of knowledge and then build walls around them.
Call me cynical, but I suspect it’s also an effect of competing interests: in a fully-private system, the hospital and the hospice are competitors for patients’ money, so they have an interest in keeping as far away from each other as possible; in fact, the hospital has an interest in keeping on patients as long as possible, if they are solvent.
It’s usually the opposite here in Europe with most national health services: all too often, hospitals (and/or general practitioners) want to discharge patients asap (because they cost money), so the hospice option (which is usually private, so has to be paid for by individual families, rather than the community) is pushed hard even where it might not be fully appropriate.
Fascinating, Giacomo. I wonder if there are any systems where the incentives balance and it’s a relatively unencumbered choice.
Jon, another area of knowledge silos is vision rehabilitation which too many eye doctors do not understand nor are capable of compassionate referral beyond Medicare charge codes.
Thanks for shining lights on the hospice situation. I just signed up for a refresher and workshop on family conflicts using the Five Wishes template http://en.wikipedia.org/wiki/Five_Wishes
This approach structures social, medical, and personal thinking sufficient to put necessary information into writing that complements legalese. It is easy to get trapped into attorney manipulations of trusts, wills, probate, tax
mitigation, etc. when the social forms of knowledge are difficult to approach.
FYI, these Five Wishes workshops are locally situated a Lifelong Learning Institute funded nationally by the Bernard Osher Foundation http://osherfoundation.org/index.php?olli and locally organized at Yavapai College http://yc.edu/prescottolli. Since retirement, I have benefited immensely by this peer learning culture and am now revving up my next course on “The Singularity and Abundance”.
Knowledge silos dissolve when “informal learning” takes over.
Susan
blog http://asyourworldchanges.wordpress.com “As Your World Changes”
I’m going to have to agree with the financial factor. It isn’t in the hospital’s or the doctor’s best financial interest for the patient to transfer over to hospice care.
To put a finer point on it, notice that hospital staff has the highest level of credentials of anyone in modern society. They have intense requirements of class work, testing, and apprenticeship (residency). Moreover, the slightest hint of malpractice will often mean they have to leave the profession due to their insurance becoming too expensive.
These are the best possible experts we can ever have. And yet, they are often spectacularly wrong unless you ask them questions in precisely the ways they are trained to answer them.
A crucial insight. I think Gawande’s writing engages his own meta loop of “am I path dependent here? If so, why, and how do I get out of it?” This is a powerful reason for encouraging shared open reflection and narrating of work.
Jon
While honoring your feelings that you may have left a stone unturned in your father’s final days, you should not feel guilty. Hospice services were only introduced to the US in the 1970s and it often takes at least a generation for people, both professionals and others, to fully understand and integrate any kind of new approach. That’s certainly true of health care, but not exclusive to it.
Gawande is unusually reflective of the implications of what he sees outside his own practice to his personal practice of medicine. But he also has a very large audience, including among medical professionals. Though not specific to hospice care, I can tell you from direct observation that physicians, nurses and others, read and listen to him. And they often act upon it.
Of course, this is not uniform. Some years back, I did some consulting work for an Oncology practice. They were unusually resistent to referring their patients to hospice. Yes, of course, there was a financial incentive for them to continue treatment, which was largely chemotherapy. But ultimately, I came away with the sense that another factor was the primary driver: their emotional unwillingness/inability to give up in the face of repeated failures to save patients. That was simply a function of the specialty they had chosen. Not that hospice shouldn’t have been the patients’ option and choice. Ultimately it should have been. And perhaps, the physicians themselves would have been emotionally healthier, if they had been more willing to come to grips with the emotional toll of their specialty, their focus was having on themselves. But, I would certainly not accuse them of acting primarily for reasons of financial self-interest.
There has been progress so much so, that in some places, the integration of “palliative care” in hospital and other clinical settings has come to be perceived as a threat to hospice-specific organizations.
Best wishes.
Jon – Thanks for writing this post. I think our system doesn’t encourage people to seek out palliative care for a few reasons:
1 – Although financial incentives play a part, I don’t think most physicians consider this when it comes time for palliative care; they simply want to honor the wishes of the family and patient, and it’s not always clear what the “right” call is. Fee-for-service doesn’t help, though, because any treatment that is given will be reimbursed. So unless there’s a clear message from the family, treatment can and will continue.
2 – More significantly, I feel that western culture has a strong bias toward fighting and winning and never giving up – it’s a uniquely American / western view, that independent fighting spirit.
3 – And then perhaps most significantly, we have so little interaction with death, we simply don’t have an alternative that feels comfortable. Palliative care often encourages exactly what you have described, which is simply being present with the person. We also experience many figurative deaths during our lifetimes, which increases our compassion, so we don’t need to leave “full of argument” as Mary Oliver says in her poem “When Death Comes”.
I have been somewhat immersed in this topic recently, and may I recommend a few resources:
– The New School at Commonweal.org (listen to Frank Ostaseski’s talk http://www.commonweal.org/new-school/TNS_Library2011.html#Ostaseski110501)
– Frank Weller’s talk at The New School in December; and
– Frank Weller’s brief but excellent book “Entering the Healing Ground” which I just finished
+++++++++++++++++++++++++++++
A couple of poems referenced in his book:
to live in this world
you must be able
to do three things
to love what is mortal;
to hold it against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go
(Mary Oliver)
++++++++++++++++++++++++++++++
‘Tis a fearful thing
to love what death can touch.
A fearful thing
to love, hope, dream:
to be– to be, And! to lose.
A thing for fools, this,
and
a holy thing,
a holy thing
to love.
For your life has lived in me,
your laugh once lifted me,
your word was gift to me.
To remember this brings painful joy.
‘Tis a human thing, love,
a holy thing,
to love
what death has touched.
Thanks Greg. I agree with your #3. A silver lining here is that my then-teenage kids, for whom this was a first-time experience as it was for their parents, have acquired a key perspective way sooner in their lives than we did.