Physicians are also squeamish about Advance Care Planning discussions!

The Vancouver Sun featured an article, "Refusal to face reality of death leads to increased use of aggressive, futile health-care efforts: Doctor calls on Canadians to 'normalize conversations' about end-of-life care"

It's great to see this kind of story popping up across the news. The more we talk about it, the less scary it is to discuss; the end result is that we'll provide less futile care and offer better palliation, sooner, meaning that patients can have the best possible quality of life until the end.

The title of the video basically says it all; cardiologist Dr Heather Ross talks about the challenges that physicians face when they need to talk with patients about end of life care. It's interesting that she should remark on her discomfort with these kinds of discussions, as that was not something that came up in the study that prompted this Sun feature. 

The study in JAMA Internal Medicine is Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their Families: A Multicenter Survey of Clinicians. You at al. surveyed 1256 Canadian health care providers to identify some of the major challenges with discussing end of life situations and they identified the following:

  • family members' or patients' difficulty accepting a poor prognosis

  • family members' or patients' difficulty understanding the limitations and complications of life-sustaining treatments

  • disagreement among family members about goals of care

  • patients' incapacity to make goals of care decisions

Clinicians did not view system factors as significant barriers to these discussions, which I find surprising since we usually talk about underfunding, overcrowding, paperwork, communication errors, and bureaucracy whenever we have a tough problem to solve.

Interestingly, health care providers did not feel that their own skills presented major barriers to having care planning discussions. Well! I find that hard to believe. Clinician factors probably contribute greatly and we seem to have a blind spot for our own weaknesses!  

Fortunately Dr You acknowledges this:

“Overall, the sense from the clinicians is that patients and families tend to get in the way” of making concrete decisions about a patient’s care plans, You said. “This is what they perceive,” You said. 
“But I think it reflects that if patients and families are having a difficult time, then one of the solutions clearly has to be that physicians need to be skilled communicators — they need to know how to navigate these sometimes emotional or difficult discussions and be sensitive,” he said

A clinician's personal discomfort, uncertainty about prognosis, fear of not being liked, and other individual factors are definitely contributors to the difficulty of talking about dying with patients. A lot of the things that make it hard for doctors and nurses to talk with patients about planning for death and dying also contribute to the more general problem of inappropriateness in health care. 

So what can we do? Start here: It's Time to Talk: Advance Care Planning in BC. 

I'm proud to be a part of the Doctors of BC Council for Health Economics and Policy (CHEP), which is where Dr. David Attwell  spearheaded the creation of this policy paper.

Take a look. It's never too late to start talking about it!

My moral distress: a follow-up regarding forced futile care

Well, I guess I'm not alone.

The article 'Doctors and nurses working with critically ill patients suffer moral distress, research finds' in the Vancouver Sun, unsurprisingly revealed that many health care providers struggle with the kind of care we have to give at the end of life.

Researchers from the University of British Columbia who surveyed 1,400 ICU nurses, doctors and other health professionals have found worrying levels of distress in the very places growing numbers of  Canadians will exit this life. Half the critical care nurses surveyed, and 27 per cent of ICU doctors, said they have considered quitting their jobs because of distress with the way patient care was handled at their hospital . . .

[T]hat waiting time for nursing staff is difficult, because the question in their heads is, is the patient comfortable? Are we actually doing harm versus doing good? Are we prolonging the dying process, rather than prolonging life? . . .

'we’re over-intensifying care at the end of life and causing not only the patient to suffer in those final stages of life, but the poor loved one who witnesses all of this and lives with that poignant memory of an intensified death'

I certainly struggle with this, and it has been the dominant existential angst in my world this past year. 

I wrote about feeling like I would quit my job if I was forced to provide medically futile care. I talked to colleagues, friends, and new acquaintances. I met a woman at a conference in Oxford who said it's something (at the end of her career) that she still struggles with and felt things were getting worse. The one bit of fantastic help I found was a colleague who referred me to the British Medical Association policy "Decisions Relating to Cardiopulmonary Resuscitation"  (Oct 2014), which is perfectly in line with my understanding/beliefs/duty. However, it is not Canadian and so can I really adopt it as my practice? I didn't really feel better. I was worried I'd never enjoy my work again.

I love helping people get back on their feet! There's nothing more rewarding than seeing a spry 87 year old lady racing up the stairs with the physiotherapist after a broken hip recovery! I also feel good when I have brought emotional comfort, relief of pain, a warm smile, a hearty laugh, or helped just by being there for a patient who is dying.

When people die, it is very sad. It is also rewarding to have been trusted to support them as they pass away with dignity and comfort, especially when their life no longer contains the qualities that brought them joy and meaning.

I hemmed and hawed and made plans to work in an environment that would still involve end-of-life-care, but would involve less intense encounters. The affluent, big-city hospital is not the right place for me if I find it morally exhausting to navigate the fine line of catering to patient family's wishes vs "doing the right thing and not causing harm."

We don't want to "give up" on anyone, but maybe that's what it sounds like I am suggesting to my patients? Dr Brett Belchetz suggests that by changing the term from "Do Not Resuscitate" to "Allow Natural Death" ('Do away with the term 'Do Not Resuscitate,' National Post) we can help remove some of the distress around end of life planning. That might help, but there's so much more than semantics involved.

I can't rapidly change the thinking of the people around me, but I can change the people around me! As obnoxious a statement that is, it is true and though running away will not solve this problem, it might help me somewhat. I need more joy back in my days! I get some in the big hospital but I remember having much much more every(any)where else.

My partner and I considered relocating back to Ontario, where we are both originally from, for his job and for me to work in a smaller town. We were convinced Ontario wasn't right for us, with the help of one of his colleagues who had recently made the same consideration. Of course it makes sense for us to stay in British Columbia, but I had mixed feelings about not returning to Ontario. Then, a follow-up article by Tom Blackwell appeared in the National Post: Doctors need patient or family consent before stopping end-of-life treatment: new Ontario draft policy.

Since we are talking about death and dying, let me say this draft policy provided the nail in the coffin on any lingering desires to move to Ontario.

I am again terrified of the precedent this sets. 

The blueprint, to be released officially Thursday, contrasts with the existing advice offered by Ontario’s College of Physicians & Surgeons — that doctors should avoid treatments they believe will be of no benefit or harmful to a gravely ill patient . . .

The current policy says when it is clear that a treatment will almost certainly not benefit or may be harmful to a patient, “physicians should refrain from beginning or maintaining such treatment.”

The new draft says physicians must get consent from the patient, or “substitute decision maker” if the patient is unable to voice his or her wishes.

How can I reconcile my profound moral distress with this policy? How will you manage?