A good death

The Supreme Court of Canada has recently struck down the law making assisted suicide illegal in Canada, and the federal government has now just slightly less than one year to introduce new legislation governing how this is going to be handled.  There has been a lot written about this change and what it will mean for Canadians.  Disability groups are up in arms, believing that this is the beginning of a slippery slope into genocide of disabled people.    The reality is that this law will likely only affect a miniscule number of Canadians.  For assisted death to occur, the person must be of sound mind, and I’m hopeful and reasonably confident it will be a rigorous process to go through, with many checks and balances along the way.  And while science, and fiction, and science fiction, continue to explore the possibility that we may all one day be immortal, death will continue to be the great leveller in all societies.  “Why do people die?” our 5 year old son asked the young lady sitting next to him on a long flight a few years ago.  My husband and I looked at each other with a smile and waited for the answer to the question he had never asked us.  “Because if nobody died, the earth would be too crowded” she told him.  He nodded and accepted this as a pretty good answer.

The BBC recently featured an article about a surgeon struggling with his father’s death.  I was flabbergasted at his attitude that death and the whole dying process were excruciatingly painful to him. I would hope my expertise with the dying process would make me a good resource and voice of reason with my own family.  As physicians, we should be supporting and treating our patients throughout their lives, up to and including the dying process.  Myself and a lot of my colleagues who deal regularly with dying patients have pretty strong attitudes as to what we want for our own end of life care.  What is usually wanted for end of life care by medical personnel is a lot more hands off in terms of medical interventions than what we put our own patients through. Sadly, trying to back away from our usual aggressive investigation and treatment of every symptom is not something we are trained to do, but are actually trained to fight every step of the way (and get compensated for while doing it).  While we are all dying a little bit every day the actual process of dying has been demonized so much by our society that it is hard for us even to say the words.  You do not hear “He died” so much as passed on, is gone, passed away, went into the arms of the Lord, cashed out, bought the farm, etc.  The euphemisms are endless, and there are so many of them is because we are so uncomfortable with the idea of death and dying.  When we do use the term “He/she died” it is usually to describe the death of someone we were not close to.  We cannot even say the words to each other, and that is a real problem.

For what is going to be a universal experience, we don’t do much, if anything, to prepare for it and so it seems it is inevitably a struggle against the inevitable, for the patient, the family, friends, and caregivers.  There are now fewer and fewer people dying suddenly from unexpected causes.  Our dying and death experiences are being extended into years and decades, or if you flip it around, our living experience is being adversely affected by the fact that we are dying slower.  This is called “adversely affecting quality of life” in medical terms. While the occasional patient faces their imminent death with acceptance, the vast majority do not. Even the way death is described in the obituaries suggests our conflicted relationship with death- “a valiant battle with cancer”, or “after struggling with (insert disease here) for many years…….”  People put more thought into what car they are going to buy than what they would like their own experience of death to be.

As a surgeon who looks after people who are dying, it is hard to reconcile active treatment and good palliation most of the time. While you never want to take away hope, the cost of not taking it away is, a good part of the time, continuing on with procedures, tests, and interventions which run counter to good palliation.  Palliation refers to treatment offered by the health care system to ease symptoms, and is usually offered to patients who have begun a more active phase of the dying process.  This includes pain and nausea control, hydration, and emotional support, often in addition to backing off of testing and all of the needle pokes, appointments, and fasting that more active treatment often entails.  Continuing to actively treat patients is often used as a surrogate marker of hope by patients and their families that all is not lost.  Healthcare providers sometimes continue to treat because it is easier than having the tough conversations, and sometimes because we are forced to, by the patients or families’ wishes.  This ongoing active treatment has its own costs in terms of complications, side effects and increased mortality though.  I am often asked to see extremely ill patients with very limited life expectancies in the hospital, often to assess for operations, procedures, or investigations which are clearly futile.  Our astounding ability to focus on our own area of expertise becomes a good excuse to not deal with the obvious issue that the person in front of us is dying, rapidly.  I am guilty of this myself, although I have become better at seeing the forest instead of the trees as I get older and more experienced.

Most people die in hospital and so media headlines trumpeting how dangerous being in hospital is in relation to your risk of death really anger me.  We all have to die sometime, and the reality is a lot of us are going to pass away in a hospital setting, and it is going to be an expected event.  Very few people die at home anymore.  Families are all too often not equipped to deal with both the physical and emotional burden of a loved one dying at home.

At lot of physicians have a problem with the concept of DNR, or do not resuscitate.  The acronym AND, or “allow natural death” has been suggested as a better term, as it implies the healthcare team is not withholding care as much as letting the inevitable happen, hopefully while continuing to support the patient.  Competent patients’ wishes in regards to what they want for end of life care should be respected by all healthcare providers, the judiciary, and most importantly, friends and family. So while I believe the Supreme Court decision is long overdue, the upcoming tsunami of the problem of a good death is the elephant in the room in many health care discussions.  As medical technology which increases our quantity, but not our quality of life and rapidly outpaces our ability to want it, much less pay for it, the question most often will be not “Can we?” but “Should we?” We need more conversations to take place a lot earlier between healthcare providers, families, and patients.  There is nobody who is not a stakeholder here.

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