Over on Facebook, I pondered why I always got such nice sympathy cards from my vet when I lost a pet, but had received nothing from any of my mother's doctors when she died. (Granted, it's not too late. A card or phone call could turn up at some point, but for now the flow of cards has slowed and I'm assuming the window for sending would have passed.)
I'm not devastated by this, but I do feel a restless sense of dissatisfaction, particularly with respect to the ICU group, since my mother died on a Sunday when only one of her many doctors was on call, and because she was cared for by ten or more doctors, all of whom believed things were getting better 24 hours before she died. It would be a balm for me, personally, to have had some sort of reaction from them, to know how they felt when they came in to work Monday morning and found her room empty and learned what happened. I would have liked to have a final debriefing, and to know that the doctors felt grief and sadness, too. Instead, I have to live with silence.
As well, we've not heard from the cancer center or the primary care physician. Again, not a huge deal, but it's a bit of an eyebrow raiser to me because up until now each of those clinics has observed every nicety and every ritual of care, and even gone above and beyond in some cases. So what gives?
My question prompted a variety of responses on Facebook. Quite a few people felt similarly snubbed.
One friend got hit up for money after spending a lot of time at the hospital with a sick child,
My hospital sent me a card suggesting that since I had received such excellent care, perhaps I would like to make an additional voluntary donation to their foundation.
Another friend phoned the doctor's office, looking to have that last conversation, and went away disappointed:
When my dad died, I called the doctor and left a message thanking him for everything he had done. Never got a response.
Even children who lose a parent are apparently not exempt from the Medical Snub:
I just got bills. I WAS SEVENTEEN.
It is not true that doctors never send cards and veterinarians always do. My mother-in-law got a card from the hospital where my father-in-law died last February. It was a simple card, not personalized in any way, signed "Your friends in the Cardiac ICU at B--- Hospital." It was nice. Truly. I was touched when I saw it.
A 2002 article from The Oncologist addresses dealing with bereaved families. That article strongly implies that the physician's duty to the family extends beyond a mere card or verbal expression of sympathy, but that it can be draining to extend that care to bereaved families.
One oncologist wrote:
He talked to us probably once every day or two and was seeing me at least weekly for the last 3 months of his life (pause); and then he died two months ago. I called his wife to offer my condolences and we really haven't talked since, nor have other people from the team talked to the family. We were talking yesterday about how hollow that feels.
Perspectives from a palliative care perspective tend to focus more on families:
In the palliative care service, we have a built-in follow-up for patients and families following a death. However, we still struggle with what the right kind of follow-up should be. How much? How often? What should we be doing? How much can we help?
And a social worker chimes in:
The kind of closeness that the staff has with the person when he or she is terminally ill and going through treatment, is something that few others in the community really share with the family. Then the emptiness that's left after a death is one of the toughest things to deal with. I think part of what makes continued contact so meaningful is the knowledge that you weren’t just doing your job. You’re acknowledging that you connected with the patient and the family in the struggle, and that the relationship still holds meaning for you. The medical team can become an extended family. The family or relative can feel very isolated.
And from another oncologist:
Hospice programs have wonderful bereavement programs but their bereavement staff, for the most part, is not the staff that cared for the patient prior to the death. They are separate and they are separate for a lot of pretty good reasons. You can burnout caring too much. I would like to ask a question that I struggle with. I know we all feel that we want to be there and reach out to our families, we don’t want to be seen as not caring, and people are truly at risk for significant dysfunction. But what I struggle with is where do you draw the line? It has been a personal struggle for me trying to balance my clinical care with my own sanity.
Unlike a typical journal article, there is a lot of commentary and anecdote in the article. It's worth clicking through to read the whole thing.
For me, the bottom line is that the grief and bereavement specialists are in the hospice business, but most people don't get to die in hospice. You really need a fortunate combination of diagnosis and foresight to end up in hospice, even for a short time. For most people, the end of life comes either too quickly or too gradually to allow hospice. Many people, like my mother, will pursue cancer treatments as long as they are reasonable. And they can be reasonable right up to the end, thanks to advancing technology. It's easy to draw the line and say you're going into hospice when it's clear treatment is futile. It's much, much harder to make that decision if treatment still gives you, say, ten or twenty percent chance of survival, and you can ride that percentage right into the ICU, like Mom did.
When my husband's father died, he had been very ill for many months. He might have been a candidate for hospice, but it's very difficult to have that conversation, and as far as I know, no one broached the subject. Even if they had, he might have rejected it because many people perceive hospice care as a death sentence, or "giving up." After four or five months of quite serious illness, he had a heart attack and died in the ICU.
So the situation is that all of the bereavement resources and experts are concentrated in an area of medicine that only a lucky few will experience. Meanwhile, the rest of us are thrown into the meat grinder of the ICU experience--a place where staff are certainly supportive, but care for families is willy nilly (usually left up to a nurse who is already burdened with two or more critically ill patients) and bereavement counseling nonexistent.
I recall the social worker who visited a number of times throughout my mother's stay. She was very kind, very nice. She asked how I was doing, and if there was anything I could do. My answer was that I was very stressed and scared and that I didn't know. That was the whole conversation, every time. It was awkward, not helpful. I felt a weird compulsion to try to comfort the social worker.
Ultimately, I don't think the lack of acknowledgment from doctors and other caregivers is due to burnout or a lack of time or resources. I think it's just something that no one has made a plan for or thought out yet, and obviously at other hospitals it has been thought of and implemented. Sending cards is easy, and it does make a difference. All it takes is for someone in management to decide they want to offer consolations to patients, and to order the cards, and to assign a clerk to address and mail them once a week or so. (Bonus points if they can pass them around in the break room for personalization.)
Some people had complaints also about appointment reminders after a loved one died. That's another issue that has an easy administrative solution.
Much harder, though, is the question of how to make the ICU as smart about end-of-life care as hospice, because like it or not, that's where most of us are going to die.
Catherine Shaffer blogs at soshiny.net
More from health