End-of-life care

Between the idea

And the reality

Between the motion

And the act

Falls the Shadow

T.S. Eliot, “The Hollow Men”

Most people in Canada do not get to die as they would like to—at home, with loved ones and without suffering. Dr Ladouceur’s editorial¹ is one example of the current quality of end-of-life care and of the confusion of the terms surrounding it—euthanasia, physician-assisted death, physician-hastened death, palliative care, and, in his article, medical aid in dying.

What morally differentiates these terms is the ethic of intention, of beneficence and self-determination. All terms relate to relief of suffering. Only palliative care provides a continuum of ongoing care managed by the patient, family members, and caregivers. Here is an excerpt from the World Health Organization definition of palliative care: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.²

In the case example given in the editorial,¹ the patient died suffering and his family suffered, and the discussion of medical aid in dying is sadly ironic because the principal reason for requesting the means to one’s own death is the fear of suffering.

Nonetheless, the term medical aid in dying is misleading: it is not aid in dying, but rather aid in suicide. Physicians do assist in the process of dying—it is called relief of suffering. That said, physicians relieve suffering in the process of saving lives as well. However, in the instance given, death was imminent. The patient’s daughters wanted the suffering to end and to achieve this they were willing to accept the risk of death for the benefit of relief. Thus, they implied an informed consent along with the acceptance of the double effect of palliative sedation. This is morally acceptable albeit perhaps for some morally distressing. The family’s focus was on the suffering, while the physician’s focus was on the dying.

Suffering and dying need to be distinguished. When death is imminent and suffering apparent, this is not the time for moral confusion or stances on middle ground. Unconditional compassion for the patient and loved ones will provide creative solutions to achieve a peaceful and dignified death.

There is only one chance to get end-of-life care right. In Canada, most people die in hospital (more than 60%) and few receive palliative care services (less than 30%).^3,4 This is not how we wish to die. To that end, there are calls to action:

• The Canadian Society of Palliative Care Physicians issued recommendations in November 2016.⁴

• Bill C-277, a private member’s bill to effect universal access to palliative care, was introduced in 2016.⁵

• Palliative care education is expanding. In particular, the College of Family Physicians of Canada now provides a Certificate of Added Competence in Palliative Care (430 practitioners across Canada in 2016⁶).

• Local initiatives have been implemented. The Neighborhood Network in Palliative Care in Kerala, India, has more than 60 units serving a population of more than 12 million, and is probably the largest community-owned palliative care network in the world.⁷

Dame Cicely Saunders, the physician pioneer for hospice care, best explains the philosophy for end-of-life care:

A patient, wherever he may be, should expect the same analytical attention to terminal suffering as he received for the original diagnosis and treatment of his condition. The aim is no longer a cure, but the chance of living to his fullest potential in physical ease and activity with the assurance of personal relationships until he dies.⁸

• Copyright© the College of Family Physicians of Canada