How Much Control Do Patients Really Have Over End of Life Decisions?

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April 27, 2015
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How Much Control Do Patients Really Have Over End of Life Decisions?

hospital room

In June, the government of Canada passed legislation on doctor-assisted dying. The new legislation did little to help patients dealing with prolonged suffering. In many ways it is a step backwards from informal practices and makes it harder for patients to appeal to their doctor to end their suffering.

If we are honest, we can acknowledge that subtle forms of doctor-assisted dying have been practiced for decades if not hundreds of years. I personally know of individuals who were in so much pain that the attending physician quietly provided a boost of narcotic relief that also predictably allowed them to pass on.

Up until now, the power to make these decisions has been in the doctor’s hands and exercised at the end of life when convinced that no other medical options are available to extend life or to ease suffering. When the doctor has lost hope, ‘pain relief’ at high levels has been an exercised option. Now a patient must make application to a panel to judge whether or not death is ‘imminent’ and there is a level of suffering that cannot be controlled. This was not the intention of the Supreme Court decision and keeps the control squarely in the realm of doctors.

The intention behind the Supreme Court of Canada decision was ground breaking and is the first of many to come that will begin to shift the control of end of life decisions from doctors to their hallway

When my mother passed away in 2014, I saw first hand how doctors can override the preferences of patients.

My mother, who was 90, had a Do Not Resuscitate, (DNR), order which are quite common for elderly and critically ill patients. But this order was really a false comfort in that definitions are vague and there are many very intrusive interventions that can keep you alive even when there is no hope of recovery. She was dying from an infection that had gone septic. Still conscious and aware, she was asking for food and pain relief. These comforts were denied because she was told they might ‘mask her symptoms.’

At this point recovery or discharge to a care facility were not possibilities due to significant organ damage, but no one had told her. They even suggested trying dialysis as a last ditch effort to start her damaged kidneys. The doctors wanted the family’s approval to do this because it would be painful and was really a ‘Hail Mary’ effort to keep her alive longer. I questioned why they were talking to us before my mom and if an intrusive, painful intervention is started, wouldn’t withdrawing treatment become an issue later? Would this have just added to her pain in her last week of life? Within hours, they decided the dialysis was not a good idea, it was too late, as if ‘our’ hesitation was to blame.

I was left wondering, how would they have approached mom after talking to us? Your family and doctors all agree to try dialysis, OK? Having been on the patient side of things myself, this is often about as good as informed consent gets.

So, if the patient’s wishes contradict the doctor’s, does the patient’s voice get lost? Will their mental health be called into question? How can this voice be heard if the patient can no longer effectively communicate their wishes? All of these issues need to be addressed is the legislation.

Doctors and care facilities can over-ride patients advanced care directives.

In April of 2015, a BC judge in Abbotsford ruled to over-ride the living will of a patient and allow a facility to force feed her. This is an alarming example of the routine decisions made to keep patients alive against their wishes. Compliance with living wills and advanced care directives must be addressed in legislation to begin to shift decisions from the doctors and facilities to the patient.

After trying a couple more interventions on my mom over the next day, that did not go well, they finally told her she would not be going home and would likely die. She died within hours of this information. She never got the meal she had begged for and the pain relief only came at the very end.

I understand where doctors are coming from and how they would like clearly defined lines in their promise to preserve life and ‘do no harm’. But up until now, the definition of ‘harm’ has been from their perspective, not the patient’s.

The new legislation fails patients. It does not allow patients to take control of their end of life decisions. This control remains with doctors to make decisions from their perspective. It does nothing to empower the status of advanced care directives, leaving patients vulnerable to have their end of life decisions cast aside by their family, doctors or the facility in which they reside.

Let’s not get polarized by the assisted dying debate. Research suggests that few patients will actually choose doctor-assisted suicide. Let’s advocate instead for legislation that empowers patients to make their own decisions and requires doctors and facilities to listen and follow a patient’s end of life directives. Let’s give control to the patient. It may be as simple as allowing a meal, pain management and to die on their own terms. This would be a great start.

1 Comment

  1. GunneR666 says:

    It’s usually a relatively easy choice for the patient too, says Stuart Sutton, a GP and member of Newham clinical commissioning group, who has found that what patients want is “a balance between something that’s local and the time they’re going to have to wait”. The other factor that comes into play, he says, is if a patient with complex needs wants to be treated by a particular specialist.

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