National Public Radio (NPR) held a conversation recently that discussed the question of how terminally ill doctors make end of life decisions for themselves. This is instructive because, of all people, doctors understand the consequences of trying to keep people alive when, frankly, all hope has been lost.
In the NPR interview Dr. Kendra Fleagle Gorlitsky, who now teaches medicine at the University of Southern California, recalls the anguish she felt performing CPR on elderly, terminally ill patients.
"It looks nothing like what we see on TV. In real life, ribs often break and few survive the ordeal. I felt like I was beating up people at the end of their life," says Dr Gorlitsky."I would be doing the CPR with tears coming down sometimes, and saying, 'I'm sorry, I'm sorry, goodbye.' Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone's life."
Dr VJ Periyakoil, clinical associate professor of medicine at Stanford University Palliative Care Education and Training Program, recently published research study on doctor's choices for end of life care. She and her team concluded that most physicians would choose a do-not-resuscitate order for themselves when they are terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.
"It's a disconnect that needs to be better understood," said Dr Periyakoil."Why do we physicians choose to pursue such aggressive treatment for our patients when we wouldn't choose it for ourselves?"
The Stanford study involved two sets of subjects: One comprised 1,081 physicians who in 2013 completed a web-based advanced directive form and a 14-item advance directive attitude survey at Stanford Hospital & Clinics and the Veterans Affairs Palo Alto Health Care System; the other comprised 790 physicians from Arkansas who were asked the same 14 survey questions.
An overwhelming percentage of the 2013 doctors surveyed — 88.3% — said they would choose do-not-resuscitate (DNR) orders for themselves. It is conceivable that if the same survey was conducted in Australia that it would produce similar results.
This subject was first highlighted in a 2011 article by Dr Ken Murray, a retired family practice doctor, entitled How doctors die. He told the world that doctors are more likely to die at home with less aggressive care than most people get at the end of their lives.
Dr Murray said, " … Of course, doctors don't want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They've talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR - that's what happens if CPR is done right."
Dr Murray concluded in his article that he wants to have a gentle death where no extraordinary measures are taken when they have no meaning.
A majority of older Australians and those suffering from terminal illnesses, report feeling the same way. Yet, they often die while hooked up to life support. This makes sense, in one respect, in that Doctors are trained to prolong life to the greatest extent possible. Dr Murray talks about "futile care" being performed on patients. That's when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs.The question is, how many doctors have conversations with their patients about death? How many explain the options and describe the outcomes?
Dr. Babak Goldman, a palliative care specialist at Providence Saint Joseph's Medical Center in Burbank, Calif., says, having the tough talk may feel like a doctor is letting a family down. "I think it's sometimes easier to give hope than to give reality."
There is, of course, a very big difference between DNR orders and assisted suicide. The American Medical Association says that "physician-assisted suicide is fundamentally incompatible with the physician's role as healer."
The Australian Medical Association in their Position Statement on the Role of the Medical Practitioner in End of Life Care (September 2014), progressively states that the AMA recognises that there are divergent views regarding euthanasia and physician assisted suicide. They state, "medical practitioners should not be involved in interventions that have as their primary intention the ending of a person's life. This does not include the discontinuation of futile treatment."
The issue is a legal minefield. A study published in the Medical Journal of Australia in August 2014 found "critical gaps" in the legal knowledge of doctors that could expose them criminal charges including murder, manslaughter and assault. The survey of 867 doctors found that, on average, they correctly answered just three out of eight questions about laws regarding end of life care.
If they are unclear on the law, are doctors also unclear on what constitutes good medical practice for end of life care?
The Australian Medical Association's position statement says, "If a medical practitioner acts in accordance with good medical practice, the following forms of management at the end of life do not constitute euthanasia or physician assisted suicide:
- not initiating life-prolonging measures;
- not continuing life-prolonging measures;
- the administration of treatment or other action intended to relieve symptoms which may have a secondary consequence of hastening death."
Divergent views on end of life care by the medical profession are understandable. In the heat of the moment when a patient presents in an emergency room it is very difficult for doctors to make the call. The lines can easily become blurred and in many cases other family members may not be present and the doctors may not be aware of an advanced care plan or DNR order. Even if the attending doctor is aware of a DNR order, where does he stand on pain management and the use of drugs?
In the end, it will come down to a judgment call, and doctors can be forgiven for erring on the side of prolonging life, even if they would not do it for themselves. Why risk your career by being sued after misconstruing what, "administration of treatment intended to relieve symptoms which may have a secondary consequence of hastening death", means?As Dr Ken Murray concludes, "Doctors still don't over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever."
Palliative care, delivered at home, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Encouragingly, more doctors than ever are taking pause, thinking through the options, and allowing families with terminally ill loved ones, to die well at home. After all, that's what they want for themselves!