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!

Advance Care Planning Does Not Adversely Affect Hope or Anxiety

I sometimes have a hard time bringing up advance care planning, goals of care, and wishes around resuscitation with patients and their families. Is it because I'm afraid?

Nope! I've done it so much and make it part of the admission routine. And, I enjoy it because I think it is an amazing thing we can do to discuss and honour someone's wishes. Sometimes expectations are unrealistic but that is usually caused by lack of knowledge about what resuscitation can do and what it cannot; it is a pleasure to educate and also to provide my medical advice, as I would around any other issue.

Usually, it's challenging because the patients I see are often geriatric and this often comes with some barriers to communicating. Some of them are in a state of acute delirium. Some have advanced dementia or cannot speak due to aphasia from a stroke. A few have extreme deafness and blindness to the point where no aid can help us 'talk' clearly together. Many, in the big city hospitals, do not speak English or French (our National languages). Interpreters are sometimes available for other languages, but not often in a timely way, and few of them speak unique dialects that some patients have.

With those barriers, often we rely on their family members, usually spouses or children, to help translate or to help us understand what the patient's goals and wishes for end of life care might be. Sometimes it is very clear and has been laid out in an Advance Directive or in a conversation with family. But often, it's something that "never came up."

Families often find it distressing. Many say "in our culture, we don't talk about that." Or "oh, we don't want to SCARE mom or dad." I usually gently insist, reframe the discussion, and ensure they realize the importance and routine nature of it.

Discussing dying doesn't mean someone is dying, or that we are giving up on them, or that we will not treat them to the full extent that is appropriate.

Some doctors, who might be labeled as "too squeamish" to discuss goals of care, simply don't do it, which I think is unacceptable. Bur rather than call them names, we need to find out why they aren't having end of life discussions and empower them to feel comfortable and competent at doing so. Maybe they think it takes too long, maybe they worry they can't help the patient make an appropriate decision, or maybe they just need to have some mentoring to learn how. Most of the time they say "the family thought it would be too distressing."

Fortunately, this issue has been explored and we should fear not: Trying to avoid causing psychological distress isn't a legitimate reason to skip talking about end-of-life care!


Studies, like this latest one in The Journal of Pain and Symptom Management, show that Advance Care Planning doesn't make people hopeless or anxious. [you'll need an institution subscription to access the full accepted manuscript, though the abstract is pretty clear]:

Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients’ psychological well-being.

To provide patient-centred care, we need to talk to patient (or their substitute decision maker), not around them. If you are a health care provider, don't be afraid; ask them head on about their goals of care and make recommendations about what is or isn't medically appropriate. You can do it!

Source: http://www.jpsmjournal.com/article/S0885-3...

Prescribing the end-of-life conversation: Dr A. Volandes

It is a treat to see more and more articles in major publications outlining the need to talk about death and dying. The more we talk about it, the easier it gets.

If doctors (and patients) could see 'not knowing the patient's goals of care' as a problem as in need of urgent solving as 'the right-lower quadrant is tender,' 'the rhythm is v. tach,' or 'the potassium is 1.8' then we would all certainly be better off.

Read Dr Volandes take, subtitled: "Is saving the life of a terminal patient always the best medicine", in the Boston Globe.

Source: http://www.bostonglobe.com/opinion/2015/01...

Atul Gawande: why the health care system should stop trying to help everyone live longer

Quality matters. It's not just quantity that counts towards the end of our lives, and in fact, most people would choose "good time" over "any time." Physicians know this but for many reasons we can't always help patients have the best life possible before death.

Dr. Atul Gawande recently did an interview with the Washington Post on the subject, and it felt authentic. While admire his work, I do not consider myself an unconditional devotee. However, this article is truly amazing.

It is a call to action. He graciously and decisively invalidates all the excuses that physicians create to not tackle end-of-life discussions with patients, confessing some of the challenges along the way.

Read more in The Washington Post.

Some of my favourite excerpts are here:

HP: One tough question. I watched your lecture today with some primary care physicians. Their reaction was to say, “Of course all this information about the need for conversation in end-of-life care was revelatory to you, Dr. Gawande. You’re a surgeon.” In your telling of the story, how much did the culture of specialty care fail to prepare you adequately for the challenges recounted in your book?

AG: Look I’m a surgeon--highly procedural, geared towards always being able to offer something more. It’s no surprise that this field did have prepared us formally for these kinds of conversations. Furthermore, I’m in an academic medical center, high-end Mecca. Many people come there because they want that experimental therapy, the last ditch maneuver against all odds.

. . . If these [end of life] conversations are so important--and people across other fields seem to know it--we’re still not having them. It’s not happening for two-thirds of people with advanced cancers for example. We have evidence that these conversations are even less likely to happen for other common things people die of: congestive heart failure, for example.

Maybe that’s because families and patients tend to move on to a specialist rather than the primary care doctor for these conversations, but I often find primary care doctors aren’t having them, either.
HP: Even if they had the skill to have the conversation, that’s not really who the patients are looking to for these conversations.

AG: If you look at the studies, they find that having a palliative care doctor or geriatrician more closely involved in care can lead people to forego aggressive therapy sooner and have better outcomes--not only less suffering but even improved survival. But we don’t have enough of these doctors to go around. Furthermore, there’s something wrong with the idea that you outsource this kind of decision-making and discussion.
HP: One of your book’s saddest quotes comes from a hospice patient, who says: “The oncologist and the heart doctor told me that there’s nothing more they can do for me.” It’s as if palliative care and hospice are the consolation prizes we give you when we really can’t do anything more.

AG: . . .
Even when we are needing to handoff, I’m involving someone who is going to have palliative care or hospice or primary care team. I’m not involving them because there’s nothing more I can do. I’m involving them because we require other people’s expertise to help us achieve what we’re trying to do.
Source: http://www.washingtonpost.com/blogs/wonkbl...

I QUIT! Will the law force us to provide futile, harmful care?

My partner, Ian, is a pilot. Sometimes he has to get up very early, and one day this week I woke up with him and his alarm at 4:00AM.

While he got ready for work, I flipped through the news on my phone. When I found this story by Tom Blackwell, a health care reporter with the National Post, I lay in bed stunned, unable to fall asleep again.

Toronto hospital illegally imposed ‘do-not-resuscitate’ order against wishes of dying man’s family: medical board (Read)

I was not stunned to read that doctors deemed it inappropriate to offer resuscitation, intubation, and ICU-level care to an 88 year old man who had multiple significant medical problems, including recent bilateral leg amputation. The average patient over 85 has a ~4.5% chance of "good outcome" (leaving the hospital neurologically intact) after resuscitation and I expect this man's chance would have been much lower given the vascular implications of bilateral leg amputation (Good Outcome Following Attempted Resuscitation).

The story mentioned that the doctors unilaterally imposed the DNR order. To read that they switched from DNR to FULL CODE at the family's request is testament to the pressure they must have felt. When they switched it back, it sounds like they did not inform the patient's family of the change, which I think is unfair. However, refusing to provide medically futile care is something that doctors need to be able to do.

I am terrified of the precedent set by the decision of the Health Professions Appeal and Review Board.

Ian, tying his tie, was not surprised at my dismay. I told him I'd have to quit medicine if providing harmful and futile treatments became the law in my jurisdiction.

I can't do it. I just can't.

He looked at me, empathetically. He often tells me that if he took his work home, it would be a bad day for everyone. Plus, commercial aircraft are not allowed in our on-street parking area.

He knows my work is with me all the time. My heart aches far too often these days, as I wonder how long I can last in my job a large, big-city academic hospital where we face demands for unnecessary and sometimes harmful intervention regularly.

These discussions are usually different when undertaken in a rural setting. I've worked in Nunavut, where many people still hunt for the majority of their food, and patients and families seem to understand death. It is not that death is welcome, but there is an understanding that life on Earth will end. When a dying patient tells me their fear of losing dignity and of being in pain, I can reassure them, I can ease their physical pain and support them emotionally for their remaining time. I feel that I am needed as their doctor, and they trust me to help them in any way I can.

Lately, at the big city hospital, colleagues and I have been dealing with families that are adamant we provide what we consider futile and inappropriate care. This is medical care that physicians believe is not helpful and may even be harmful to a patient.

We all want to look after the patients as best we can. We want to be seen as good at our jobs and we want to be liked but above all, we want to do the right thing.

We talk about it at lunch. We wake up in the middle of the night worrying about it. I know this because I asked a colleague if I was the only one, and he told me that he had been up the previous night, worrying about what to do! The oath we swore tells us "Above all, do no harm" and yet we are constantly being asked to prolong suffering. It is distressing. How can we so flagrantly violate our ethical responsibilities?

 

Each person holds has varying definitions of "suffering." So, we talk about these cases, nurses give us their thoughts, and we get multiple physicians including specialists involved to bring new perspective. Sometimes there's an ethicist brought in to help. Most of the time, all the professionals agree.

However, no matter what we say, we cannot sway the family to see that their loved one is in pain. They will not allow us to let them go, and they are incredibly angry at us for suggesting we will not attempt to force-feed them or bring them back to life when their heart stops.

We wonder, is it uneducated families? No, many of those demanding the most aggressive interventions are health care providers themselves. In the story that kept me awake, the daughter is a nurse. In the Rasouli case, where physicians sought to withdraw futile care, the wife of the patient was a family physician in Iran.

Are they expecting miracles?

Is it that they feel entitled to have whatever they want? Do people regard healthcare as a concierge-style service where they can pick and choose whatever options they like?

Ian says:

Thank goodness the passengers don't come into the flight deck and try to tell me how to do my job! If they told me I should land the airplane even though conditions were unsafe, I'd say 'no way!'

I guess it's not that simple in medicine, as health care is a right and a public service. We do have a duty to help people, but sometimes we disagree on what that looks like.

We encourage patients to have some skepticism, to ask questions, and to take part in their health. They put their trust in us to choose the right treatment, to recognize when we need to consult a specialist, and to guide them through the tough times. But when it comes to death and dying, people get squeamish. The trust vanishes.

 

Many families are quite reasonable. They might have a hard time letting go, but gradually, they start to see that mom is really unwell and does not seem comfortable, and they let us do our best to care for her. It's the egregious cases that stick in my mind, the ones where I feel like I've been asked to hurt someone despite my protestations.

I'm not advocating for a return to paternalism. Tell us your goals, your values: what is important to you? Just as you trust a pilot to adapt the flight plan to bring you safely to your destination, trust that your healthcare providers will do their best to shepherd you through your illness.

Discussions usually involved patients with advanced age, multiple co-morbidities, and poor quality of life. Many of these patients do not have Advance Directives, and even if they do, their families do not have to respect their wishes and neither does the law.

The patients are often too unwell to speak for themselves and so it is the family that requests things like resuscitation (as opposed to DNR), artificial feeding (feeding tubes), or what we call "active medical management" which means 'usual treatment' (as opposed to comfort-focused care) in the context of someone who is dying.

Instead of facing what is a natural part of life with grace and dignity, some patients are not allowed this opportunity. They are instead medicalized, which in some cases means brutalized.

A patient who hasn't eaten for weeks is malnourished, yes. That is the progression of her dementia. She has lost the ability to swallow. Her family wants her "helped" by putting a nasogastric (NG) tube into her stomach. She's dying, and this may delay it, but it might also hasten it. Regardless of how long she lives, her last days will be uncomfortable, plagued with complications.

In the face of death, food and hope are highly seductive. But . . . I was left wondering: Does our need to feed our dying loved ones blind us to what’s really best for them? – Dr. Jessica Nutik Zitter, Food and the Dying Patient

Doctors are reluctant to participate in things that seem like torture. We swore an oath that we would not. We try our best to keep the patient's best interests in mind, but after we've fought and fought, sometimes we give in, tired out and afraid of being sued.

Samuel Beckett puts it best:

And when they cannot swallow any more someone rams a tube down their gullet, or up their rectum, and fills them full of vitaminized pap, so as not to be accused of murder.” – Samuel Beckett in “Malone Dies”

 

Two days after the first article, Mr Blackwell looked at the issue from another angle:

Doctors more reluctant to clash with families over end-of-life decisions in wake of Supreme Court ruling (Read)


He's right. We are starting to become crippled by fear. Those of us who aren't yet burnt out try our very best to protect the ethical standards we were trained to uphold. But, we all reach a point where we are tired of being screamed at, tired of seeing nurses driven to tears, and most of all, terrified that we will lose the opportunity to continue in the profession that we value so greatly.

We do what is asked even though we know it is wrong – a disgusting thought. I am young and not yet burned out, but I'm heading there fast because I cannot reconcile the idea of going to work every day and being asked to harm people. This angst makes it so much harder to enjoy all the wonderful moments and to remain humbled by the privilege to care for others.

I see the awe that Ian still has for flying, working as part of a team, taking charge of a metal can full of people who are flying home or somewhere interesting, hurtling through the sky thanks to some combination of physics and magic. Medicine can be that awe-inspiring too.

I don't want to quit. This "job" is so much more than that to me, but slowly the 'job' of being a doctor is ruining my love for medicine.