“Maggie would have wanted everything done. She didn’t want to die.”
I’m sitting beside *Maggie’s hospital bed, speaking to her sister, her only surviving next of kin and substitute decision maker. I have known Maggie for over six months. When she was first referred to see me, she was a dynamic 45-year-old woman who had just been diagnosed with metastatic pancreatic cancer. Through multiple discussions we had over the following months, Maggie was very emotional when talking about the incurability of her disease and didn’t want to discuss its eventual outcome—it was simply too heart wrenching. Now in hospital, her health had declined quickly. Many of the physicians she encountered asked about her wishes regarding CPR. Consistently and with a scared look in her eyes, Maggie told them, “Please do everything to keep me alive.”
Today, sitting at her side, I try to speak to Maggie, but she is slipping in and out of consciousness. Feeling helpless, I envision the overhead system blaring “CODE BLUE, CODE BLUE,” and the ICU team rushing over to perform CPR. If Maggie survives the ordeal, she will end up on life-support machines, not able to eat, speak, or breathe independently, and she will have an extremely low chance of being able to make it out of hospital. I wonder: Is this the life Maggie would have wanted? Did she actually understand what would happen if “everything” was done to keep her alive?
As a palliative care physician, my practice routinely involves assessing patients with incurable illnesses and discussing future treatment plans, including whether they wish to receive CPR or not at the end of life. For those who say they want it (and for those who don’t say they don’t), CPR must be performed, regardless of how much harm their physicians think it may cause.
Since 2016, the College of Physicians and Surgeons of Ontario, the regulatory body for physicians, has mandated that physicians cannot write “do not resuscitate” as an order on a patient’s chart; if they think a DNR is best, they must obtain permission from the patient or their substitute decision maker. The same is not true of other potentially life-saving treatments such as dialysis, chemotherapy, or surgery. If a physician feels these treatments present serious risks or may be ineffective, they can refuse to provide them. Sometimes patients themselves refuse these life-prolonging treatments, and still receive CPR. This is a situation which may seem incongruous to many health care providers.
Many years ago, at the start of medical school, I was taught “primum non nocere,” meaning “first, do no harm.” It is a principle I try to uphold in all patient encounters. At the same time, our medical system is founded on patient choice and autonomy. As health care providers, we always discuss current and future treatments with patients so they can make decisions congruent with their wishes and beliefs. But what do we do when it seems impossible to hold up both principles? Should we be forced to provide treatments as aggressive as CPR, knowing that they may cause more harm and suffering?
In a 2006 Canadian study of elderly hospitalized patients with incurable illness, only two percent could name the four treatments that are performed on patients during CPR: chest compressions, defibrillation, intubation, and medications. Hollywood often provides storylines of miraculous recovery post-CPR, usually in a young person who is the victim of some type of trauma such as an accident, shooting, or drowning. What isn’t shown is the brutal cruelty of a progressive decline in appetite, mobility, and muscle mass that accompany a terminal illness such as metastatic cancer or dementia. After CPR, few patients (about one out of eight) survive to be discharged from hospital, and among those who do, many do not recover their previous level of functioning, often needing to be transferred to complex continuing care facilities that can support artificial breathing or feeding. For elderly patients who have an unwitnessed arrest outside of hospital, making it out of hospital is even more unlikely—one recent study showed one survivor out of 202 in the 80–89 age group, and none among those older than 90. CPR is often not effective, so should it be designated as the default treatment?
While there is no simple answer to this complex issue, some of the conflict surrounding CPR could potentially be mitigated by better communication. Health care providers often do not have much training or experience with difficult conversations. When patients and their families request CPR, doctors sometimes respond with implicit or even explicit bias, leading to conflict and mistrust. Cultural and religious factors often play a major role in influencing patient decision making, and our biomedical model of health care does a very poor job of acknowledging and addressing these issues. Furthermore, many Canadians are not aware of and do not participate in advance care planning, a process by which anyone, at any age, can document their wishes for future health care, including their wishes for or against resuscitation at end-of-life.
As our health care system struggles to accommodate our aging population, discussions about CPR will only become more important and relevant. Health care teams should move from “doing everything” to doing everything appropriate that is in line with the wishes and beliefs of the patient. We must work toward developing better communication skills in health care providers so that patients and family members do not face bias or discrimination at one of the most difficult times in their lives. Some patients will always opt for CPR, and their wishes should be respected.
But at the macro level, we need to correct public misperceptions about CPR. Over the last 30–40 years, we have had ongoing public health campaigns promoting healthy eating and exercise, prevention of sexually transmitted infections, and smoking cessation. For decades, our society has followed the “rule of rescue,” an imperative to always save endangered lives, regardless of cost. CPR classes have been widely available to the public, and we find defibrillators in our malls, hockey rinks and university campuses. But why not also have a public health campaign to discuss the harms of CPR in patients with terminal illness, which may prevent unintended suffering at end-of-life? Patients and families deserve to know the reality of this treatment, so that when the time comes, they can make a truly informed decision.
*The patient described in this story is a composite of several the author has worked with, and does not reflect a specific individual.
The author of this article is grateful for the feedback and guidance provided by two of his colleagues, Dr. Paula Chidwick (Director of Research & Corporate Ethics, William Osler Health System) and Dr. Amanda Rosenblum (Palliative Care Physician, William Osler Health System).
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I applaud your article immensely. Perhaps you might comment on my situation. I am a 66 year old woman who had open heart surgery 2 years ago (successfully). Prior to my surgery, I was never asked to discuss a GCD order, nor in any way, shape or form asked what my personal wishes might be about anything. When I read my so-called GCD I was very upset because it was filled out by a GP I had never met, who had the audacity to assume, for want of a better word, what my wishes might be regarding MY health, and my care, should something happen to me now or in the future. Consequently he completely went against what I would want done. I would want ab.solutely no chest compressions, no intubation, no defibrillation, no anything that the doctors might have in mind.
In other words to be left to pass away the way I want to, would have been my request, had he bothered to discuss it with me. I do apologise for my rant, but I am very passionate about this. Perhaps you could suggest a way for me to sort this out without ruffling too many feathers?!
Thank you for this very insightful article; very thought-provoking. It has always been a huge debate over the CPR decision whether in hospital or in a nursing home. Having worked in an ICU for many years, we have personally seen the outcome after ROSC when CPR is successful; and this is definitely a relative term.
I do agree with you. The key part of the discussion should not necessarily be about CPR or no CPR, but rather- do you know what happens after CPR? Do you know what you are getting into, is this a life you would want?
Great article great points Dr Arya. Oh to have conversations that don’t focus on CPR/DNR but rather the practical, quality of life activities-of-daily-living that may be permanently affected by treatments/procedures – yes, even those that the surgeon, nephrologist or oncologist may recommend. To your point, CPR aside, after aggressive treatments of the seriously ill “many do not recover their previous level of functioning, often needing to be transferred to complex continuing care facilities that can support artificial breathing or feeding”
A great point Kathy! I hope one day our health care system and the people who work in it will have sufficient resources to have better conversations about future quality of life & functioning- as well as integrating a palliative care approach early in the disease trajectory, rather than at end-of-life! :-)
Great article! As Respiratory Therapist with over 35 years of working in the ICU environment I have come to learn that people think we are going to let them suffer if they agree to a DNR. I totally agree we need more public education on the harm of CPR and what it means to die without pain. Dying naturally doesn’t need to be painful.
Thanks for your feedback, I agree with you completely! A term like “do-not-resuscitate,” stated in the negative, can also be mistaken for “do not treat.” It may be better to change the wording to “allow natural death” or “AND” which has a more positive connotation.
An incident occurred while a family member was in hospital in 2013, resulting in her transfer to Intensive Care. Although she had been interviewed twice concerning her wishes in regard to medical intervention since her admission to hospital, instead of immediately initiating the aggressive intervention that she had specifically asked for (twice verbally and once in a written legal document that the hospital had on file) the ICU team called her POA to ask him to authorize a DNR order.
The hospital’s delay in initiating the aggressive therapy requested may have contributed to the brain injury the patient suffered as a result of insufficient oxygen supply.
For 10 days following her transfer to the ICU, the team continued to pressure the POA to authorize cessation of aggressive life saving therapy and sign a DNR order. Given the existence of a legal document explicitly requesting full code, it would have been inappropriate and perhaps illegal for the POA to override the patient’s stated wishes. One team member even went so far as to knowingly misrepresent the patient’s condition in order to convince the family and the POA that the patient should simply be allowed to die.
Again and again, very grim prognosis scenarios were outlined in the hope that the POA would ignore the patient’s wishes and authorize the ICU team to let her die. Quality of life was often the theme in the ICU team’s pressure tactics. The patient would likely remain in a vegetative state indefinitely (within a few days she was awake and communicative). The patient was ventilator dependent and would never breathe on her own again (10 days later she was breathing on her own). The patient would forever have to remain in an institutional setting; she could never go home again (within 6 months the patient went home to stay with family; within a year she was again living independently).
While it is understandable that the medical staff would have had serious reservations about providing aggressive life saving therapy in this case, the fact is that the prognosis offered was repeatedly inaccurate. Had the POA set aside the patient’s wishes and authorized cessation of the aggressive life saving therapy explicitly requested by the patient, a life would have been needlessly lost.
I agree that it is very important for patients and their substitute decision makers and POA’s to be well aware of the realities and risks involved in aggressive life saving techniques such as CPR when deciding upon the patient’s wishes in this regard. Physicians should also plan ahead in regard to what they will do when a patient’s legally supported wishes in regard to aggressive life saving therapies conflict with what the physician considers to be medically appropriate. The rights of both physicians and patients must be respected.
Thank you for sharing this inspiring story of perseverance- can’t imagine what the POA of the patient must have gone through at the time, and most definitely they deserve a lot of credit for adhering to the patient’s pre-expressed wishes. I agree with you- planning ahead is key so that a collaborative discussion can occur between all parties to balance patient and physician wishes.
I remember a situation like this many years ago when I was a resident. An arrest was called for a 90 something old women who was in the terminal stages of metastatic ca. Unfortunately there was no information about the wishes of the woman or her family in regard to resuscitation. So the attempted resuscitation was begun but with little evidence of success. Thankfully the attempt was called off after a short interval. I remember one of the nurses on the team who objected to the termination of the resuscitation effort. All I could think of was that I hoped that my mother would never endure such an end to her life. And fortunately she made it clear in advance that this was not what she wanted.
It is definitely a most unfortunate situation, raising many ethical dilemmas. Most definitely as you imply it is ideal for a patient to discuss their own wishes prior to end-of-life. But in an elderly patient with terminal illness, should CPR be the default? I am reminded of a case from the UK where a nurse did not perform CPR on an elderly patient, in spite of no documented pre-determined wish for “no CPR” from the patient or her SDM. Unfortunately, the nurse was found guilty of professional misconduct- even though the son was happy his mother did not receive CPR at end-of-life.
https://blogs.bmj.com/bmj/2019/03/19/james-davies-cpr-for-all-a-case-of-dr-jekyll-and-mr-hyde/
So insightful. Yes I have read where CPR is successful 66% of the time on television. Maybe 10% in real life. Sure if a 25 y.o. hockey player goes into cardiac arrest at the rink, yes CPR, AED. Simple decision.
If 85 y.o. grandfather suffering from multiple afflictions goes into cardiac arrest, it might be a simple decision on its own. Yes it helps if the person and their SDM are realistic and agree DNR.
What is sad is when people bring in religious beliefs which to me can be reverse slippery slope. We keep a person alive just because we can. Not because they could have longer quality life. BTW CPR is not mentioned in the Bible. So there is no religious basis for doing CPR or not.
The author suggests more education for clinicians. More work, more responsibility. I feel there is more need for the public to educate themselves about EOL and options. I was a palliative care volunteer for 8 years. Our hope was people at that stage accepted death. No they didn’t lose their battle so valiantly fought. No they didn’t give up! To me that is the challenge. Educate the public.
I agree with you that public education is a priority- in fact I feel strongly that a public health campaign to provide education about CPR outcomes in the context of terminal illness should respectfully take into account cultural and religious preferences. Furthermore, I would like to add that the health care community also has work to do to educate itself- you may be surprised to also learn that many physicians are not trained in prognostication, and some are still not aware about the poor outcomes after aggressive end-of-life treatments (such as CPR) in advanced life-limiting illness.
Superb article Dr Arya
You have described this form of treatment with insight, empathy and compassion.
The debate should be brought forward to the public domain, so that the public can be aware of the difficulties physicians face, where on the one hand we are forced to treat patients to keep them alive and on the other hand we may be forced to adhere to a MAID request and-or be instruments in facilitating their death.
How to steer through this maze and conflict requires lots of team support and encouragement and debriefing
In the patients best interests remains an elusive ideal.
Thank you very much Dr. Chasen for your kind words of encouragement. I completely agree that some of the situations we commonly face are undoubtedly complex, requiring teamwork, clinical expertise and empathetic communication skills. Situations may arise where it may be challenging to balance our primary ethical duty, which is to “do no harm,” with patient autonomy.
Great article. In my 38 years of nursing, I found many more “futile” interventions being done for individuals who “want to live” and they request that “everything be done”. Who doesn’t want to live? However, many people have no idea what it can mean to have “everything done”. They also don’t know how likely it is that they will be the same functionally after a resuscitation. Unfortunately we often know when resuscitation is likely to be futile but still we do it. I agree that a public health campaign is needed. Advance care planning discussions need to happen as part of routine primary health care.
Thank you so much for your comments, completely agree!