Discussing a patient’s goals of care (the level of intervention that they would want should they encounter serious illness) is a challenging component of each hospital admission. When I met Elizabeth*, I was apprehensive that her goals may not be in line with what was medically feasible. She was an elderly woman with advanced dementia – she was bed-bound, had lost her ability to speak and required a feeding tube as she could no longer swallow safely. She came to the hospital with pneumonia, and I feared that her difficulty breathing may not improve with medical therapy alone. When I proposed this possibility, her family clearly stated that their mother was “Full Code”, meaning she would have wanted every possible medical intervention to keep her alive, including CPR and intensive care if needed.
I have had the privilege of training within two medical systems. I spent medical school and an internship year in the United Kingdom, working as a junior doctor for the National Health Service (NHS). I am currently an internal medicine resident at the University of Toronto. Working within these two healthcare systems has given me the perspective to question some of our ritualized behaviours as health practitioners.
I often feel conflicted and question our approach to goals of care discussions here in Ontario. Because we are generally poor at engaging patients in advance care planning prior to a health crisis, goals of care discussions in hospital may not reflect a patient’s previously expressed wishes or it may be the first time that a patient was asked to think about their ‘healthcare goals.’ The practice that I have encountered in Canada has been to discuss all options with the patients upfront, namely:
- Is the focus to prolong your life at all costs? This would include CPR and aggressive interventions like intensive care, intubation and mechanical ventilation.
- Is the focus to prolong life up to a point? We would use medications to treat your illness, but avoid using intensive measures if the situation arose.
- Is the focus on making you comfortable over prolonging the quantity of your life?
All of this information can be overwhelming for a patient or substitute decision maker. Our (perhaps misguided) instinct as healthcare providers is to default to prolonging life at all costs. A recent ruling by the Ontario Superior Court of Justice has amended current policy for physicians to no longer require consent from patients or substitute decision makers when withholding CPR in medically inappropriate situations. This ruling has been echoed with revisions made to the College of Physicians and Surgeons of Ontario policy on end-of-life care. However, given the recency of these changes, there has yet to be a dramatic shift in clinical practice.
What I observed working in the UK was drastically different. Our ethics teaching throughout medical school was founded on the principle that any patient could decline treatment, but treatment could not be demanded. In cases similar to Elizabeth’s, according to General Medical Council policy, we would explain that CPR and intensive management measures would not be offered, and would be inappropriate based on the medical standard of care. These conversations were rarely antagonistic – in the midst of an excruciatingly stressful time for patients and their families, they welcomed clear guidance on their available care options. In cases where the patient or caregiver disagreed with whether CPR should be offered, a second opinion could be sought, but the ultimate decision lay with the physician and care team.
From a resource allocation perspective, I wonder if this ingrained drive to only offer treatment when medically appropriate is rooted in pride and protectionism for the NHS. Founded in 1948, the NHS delivers free point-of-care service to all citizens in need, no health card required. While the NHS has its challenges like any healthcare system, I frequently heard unsolicited praise for the NHS from patients and physicians alike. The NHS remains a bipartisan source of national pride, which may be a driving factor in UK physicians’ protection of medical resources to maintain fair and equal access. Throughout my training in Ontario, I have not encountered the same pride among patients or physicians for our universal health care system, established federally by Tommy Douglas in 1966.
The Choosing Wisely campaign was set up in Canada in 2014 to encourage physicians to reduce unnecessary test and treatment provision. Their policy advises early advance care planning conversations with patients and families, and we must urgently heed this advice. It is within the scope of every physician’s expertise to determine when treatment is medically appropriate and necessary.
Practicing in Ontario has challenged me ethically when offering CPR or aggressive medical intervention, espcially if my judgment is that this treatment is inappropriate and futile. If we as Ontarians took more pride in our medical system, would we be less likely to use our precious resources unnecessarily to help preserve equitable access for all? We need to change our attitude toward protecting our finite healthcare means and continually engage in goals of care discussions, as challenging as they may be.
* The patient described is a composite of several patients the author has encountered and does not represent one individual.
Mara Waters is an internal medicine resident at the University of Toronto. She is a strong advocate for the Speak Up campaign, encouraging patients and families to begin advance care planning.
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Agree with you Dr Waters that conversations need to be had early but this approach must be dynamic i.e. as the pt’s situation/condition changes, the discussions with pt, family, SCG must be revisited
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I agree with you and encourage the early care discussions and “written instructions” for all individuals. This happened in our family thanks to our doctors advice and guidance.
Valid and necessary discussion. But….Tommy Douglas is indeed the father of Medicare but it was born in Saskatchewan in 1962.
I think your comments reflect the common misunderstanding amongst many health practitioners about the difference between ethics and law, the difference between advance care planning and consent to treatment, misunderstanding about the difference between goals of care and informed decisions, about the difference between consent to No CPR and goals of care. And so on. I’m not going to write out a full response explaining the misconceptions and misunderstandings I think are in this article but will explain a bit by relating something my mother and I experienced in the emergency room of a major Toronto hospital two years ago.
I recall when I was in the hospital with my very elderly mother, who was mentally capable to make her own decisions about her health care until the day before her death, that I was cornered by a young doctor…could have been a medical student assisting my mom’s physician ….who told me that he wanted to know my moms “goals of care”.
I was more than a little upset with him by the fact he was asking me and not talking to my Mom. I then told him that he needed to talk to her not me because she was mentally capable to make her own health decisions, that I had no authority to give or refuse consent on her behalf to any treatment because she was capable, that he nor the team had even asked her who would be her SDM if she should become incapable for her own health decisions and that he needed to learn the basic rules around health decision making because if he didn’t learn that right away he and the physician he was reporting to could be breaching fundamental patients rights and be exposing both him and the other physician to complaints to the CPSO and possible civil action for damages for failure to get informed consent from the right person should harm be caused to my mom.
In respect to the so called goals of care, I told him that no one had discussed with my mom whether they were offering to her CPR as a treatment option…patients cannot demand treatments. The law requires a health practitioner to offer a treatment to a patient or to the incapable patients SDM and the patient or the SDM acting for the incapable patient then can consent or refuse consent to what has been offered. At that point no one had discussed with my mom her present state of health so that she would be able to consider any treatments offered in context of her present condition.
I told the young doctor that in the situation my mother faced….she was very frail, 94 years old,with congestive heart failure and various other ailments.. that he needed to tell her if CPR was being offered or not, and if was being offered as a treatment option that he needed to discuss with her the info required to get an informed consent or refusal from her .. which would include the risks, benefits, alternatives to the treatment being offered , and what would likely happen if she refused the treatment offered etc. I explained that this had nothing to do with whatever he was calling goals of care but had everything to do with whether CPR was being offered to her or not , and if yes, everything to do with getting an informed consent.
I was very sad to see how little he understood about these basic legal requirements which has been the law across Canada since the early 70s as a result of court decisions. In Ontario, this common law principle was codified in the now repealed Consent to treatment act in 1995 and continued in legislation in the HealthCare Consent ACT that was passed into law in 1996.
When I did some inquiries about what is taught in medical schools in Ontario about this I was shocked to see that these legal principles were often described as ethics and not law and that the message a lot of medical students were getting was that informed consent is really only required when the patient is a child or the treatment involves surgery. Informed consent is actually required for all treatments if a treatment is offered,
The recent case about CPR and the changes to the CPSO policy just reflect the law that has been stated clearly in the Health Care Consent ACT since 1996… that patients and SDMs cannot demand treatment, that treatment must be offered, that if treatment that a patient or SDM may expect like CPR that the health practitioner should be explaining to the patients and SDMs that that treatment is not being offered if that’s the case so that the patient and SDM may ask questions about that and get a second opinion if they disagree or seek another physician or simply get an understanding about what may happen if CPR is not being offered so they know what to expect. And if the treatment of CPR is being offered then the health practitioner needs to have an informed consent discussion and get that informed consent or refusal because that would be a treatment being offered and not goals of care.
I have done a lot of work these last several years about what physicians call goals of care and that varies widely. That is a term that has no legal definition So there is no one common understanding of what that is. My conclusion is that goals of care discussions are really a discussion between physician and the patient or the incapable patients SDM about what the patient would like to get from their care so that discussion is an element of what I as a lawyer would call the informed consent discussion. Informed consent is not a yes or no but it’s a discussion leading to then a decision about the treatments and care. consent is really a process not just a decision. This is a short way of describing this and requires a lot more to really explain this.
So what happened to the young physician to whom I tried to explain health care decision making ? I could almost read his mind as he figured out that he did not want to deal with me or my Mom. I could see the words I think were in his head that were not flattering so I won’t write them down here. He didn’t say anything but just walked away.
He came back an hour later with a surgeon who also brought along a small flotilla of young physicians. That surgeon, who was a more senior physician,then explained to my mom in my presence the treatments being offered to my mom , the information that my mom was seeking about her health conditions and recommended Treatment options …there were two different procedures each with risks and benefits for such an elderly frail woman.. The surgeon also explained why she was not suggesting , not offering, cpr to my mom because it was unlikely she would have benefit from it and could be left being alive but without being able to have the quality of life that my mom wanted to have at this late stage of life. This surgeon did a terrific job of doing everything expected ethically and legally that left my mom and myself well informed and very comfortable with the decisions my mom made. My mom chose what the surgeon described as the likely riskier of procedures , although she did recommend it and offered it to my mom, because that riskier procedure would likely mean faster recovery if it went well and met my mothers “ goals of care” that had nothing to do with CPR but everything what she wanted to get from her care and how she wanted to live her life if possible. My mom came through with flying colours from the procedure and spent a very short time in hospital. She lived another year and a half after that event with no reoccurrence of the health problem that had resulted in her trip to the emergency room at that time.
If anyone is interested in these issues about health care consent , the difference between that and advance care planning and how goals of care should be defined to fit within the health decision making framework, feel free to contact me at wahlelderlaw@gmail.com. I’m doing research about this so am interested in talking to health practitioners about this. I would be glad to schedule time to talk that is mutually convenient.
You are correct. But one thing I think you fail to acknowledge is that CPR and resuscitation is different than other treatments in regards to informed consent in some circumstances.
If someone deteriorates medically in a hospital and has no prior wishes documented anywhere in regards to if they would want to be resuscitated, what happens by default in a medical setting is that a code blue is called and that person gets CPR, intubation etc unless an SDM intervenes and says to stop.
Having a “goals of care” discussion (agreed, poorly defined term) in the context of this piece means trying to understand what a person would want should they essentially have an unexpected code blue. It’s meant to clearly identify those with prior or current expressed wishes to not have CPR and clearly document it so they don’t get resuscitated by default in a hospital setting.
I totally agree that MDs are not taught this properly and don’t understand that all treatments, when push come to shove, have to be offered.
How can we do this better?
Also, the UK has a much greater tolerance for “debate”/”conflict” than Canada. People argue and challenge; there’s much more acceptance that once a decision is made by the central government, then it is to be implemented. In Canada, we want to have conversations, reach consensus, make everyone happy and proceed incrementally … we see debate as a failure of the system … we value process participation much more than the end result.
Typo in the previous comment to you, Adam – should be “I wouldn’t say that the UK is more collectivist while Canada is individualist.”
As for this subject, which country debates more, and allows more honesty about inequality in society – well that has to be the UK that will say these things out loud. Canada is very closed on serious discussions on many of these issues.
I think the UK system reflects a significant set of cultural differences between Canada and the UK on many issues. The UK is more “collectivist” and Canada is more “individualist”. Basically, in the UK, there’s an acceptance that our time on this planet is limited, health care cannot prevent all suffering and prevent death, and my inappropriate use of a collective resource means that someone else might not get care as quickly. The UK system is also more centralized: patients and providers know this is being provided by the NHS and identify with the NHS, not as much as their local hospital. But of course the UK allows private care: if I want all things done to keep me alive, I can pay for that – we can’t do that in Canada, so that adds to the idea that I can demand what I want from providers. Canada’s politicians do not have an honest debate that there have to be trade-offs … it’s not a “I want it, you pay for it” scheme.
I would say that the UK is more collectivist while Canada is individualist. that’s a myth that Canada likes to spread about its citizens.People in the UK who don’t have private health care have no choice but to identify with the NHS and the second rate health care that accompanies that. In Canada, the govt and many of its citizens like to pretend we all get the same quality of health care but its just not true. Private health plans or not, those with money do have access to better health care in Canada. I imagine that’s why there’s no debate in Canada about “tradeoffs” – doled-out health care. Canada likes to pretend we are all equal here – at least in terms of health care. I wonder if that attitude you suggest exists in the UK isn’t a leftover from WWII, or the fifties – “an acceptance that our time on this planet is limited, health care cannot prevent all suffering and prevent death, and my inappropriate use of a collective resource means that someone else might not get care as quickly.”
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