VIDEO: Speed, Need, and Greed: Dr Iona Heath: Articulating why we need Less is More in Health Care

Dr Iona Heath is to me a sage leader in understanding and rejecting the existence of "too much medicine." She is not just a philosopher and crusader for the cause, but a (retired) GP who has practiced what she preaches. Her role as a physician engenders the trust of colleagues, but it is her compassion for the patient and advocacy for people (not doctors) that resonates with me.

Every time I violate my Less is More philosophy, I aspire to do better. There are many things - including speed, need, and greed - that motivate me and my colleagues to practice too much medicine, but every day I get a little better at overcoming these.

She gave a similar, inspiring talk in Vancouver which was when I first met her. I am honoured to see that she refers to me and this site at the beginning of her talk at the Londonwide LMCs' Building Resilience: Taking Control Conference 2015. View it below:

This video is about Dr Iona Heath's presentation at the Londonwide LMCs' conference Building Resilience - Taking Control

Source: https://vimeo.com/channels/llmcsconference...

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?

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.