Palliative Care: Misunderstood and Often Forgotten

This article was originally published in Policy Options

Expanding access to palliative care will improve quality of life for people with serious illnesses, while also reducing health care costs.

Society equates palliative care with end-of-life care. However, the definition should go further: palliative care should be about reducing suffering for patients with serious or life-threatening illness and improving quality of life for them and their families, at all stages of illness. Death is not a failure of medicine — it is an inevitable part of life. To not fully apply our capacity to reduce suffering is, however, a catastrophic failure of medicine.

We treat life-threatening illness by throwing everything we’ve got at it. Patients and physicians who fight to the bitter end often do so with little consideration of the undue suffering that patients or their families will experience along the way.

Consider cancer, for example — a disease that will touch the lives of most Canadians. Although oncologists are physicians who specialize in treating cancer, they may not always have the time or training to treat the physical, social, spiritual and psychological suffering of patients and their families. That’s where the palliative approach to care comes in.

Expanding palliative care

My home province, British Columbia, defines palliative care as “care provided to a terminally ill patient during the final 6 months of life, where a decision has been made that there will be no aggressive treatment of the underlying disease, and care is directed to maintaining the comfort of the patient until death occurs.”

Patients with life-threatening or serious chronic illness often live in suffering for years before they die, with no recognizable terminal phase. Thus, they often never receive the full spectrum of palliative care services available.

Palliative care services should be made available to all patients with serious chronic or life-threatening illnesses, regardless of whether they are receiving treatment for the underlying illness and at any time following their diagnosis. These changes would reflect the new palliative care mode that Ontario has adopted. Ontario has realized the benefits of early referrals and concurrent use of palliative and curative treatments: the health care system can now provide these services to anyone immediately after they have been diagnosed with a life-threatening illness.

If we have the means to treat patients with serious or life-threatening illnesses — and not just patients at the end of their lives — more holistically and to prolong and improve the quality of their lives, why don’t we do so?

Misunderstandings about palliative care

Most patients want their physicians to be realistic with prognosis and treatment, but physicians sometimes have difficulty discussing death with their patients. Often they fear that end-of-life discussions may cause patients to lose hope. But these discussions can bring comfort, especially if they include the family.

To many, palliative care means giving up on treatment and going to a hospice. But it’s more than that: it’s about improving quality of life for people with a terminal illness. It can include a broad spectrum of services such as home care and nursing support, management of pain and symptoms, bereavement counselling and support for families and caregivers. Yet, only one-quarter of British Columbians who die received palliative care services. And for those who are referred to palliative care, it is often in the last month of their lives, too late for them to benefit significantly.

Not everyone who dies needs specialized palliative care, but everyone could benefit from a palliative approach to care. That is, an approach to care that considers all needs of the person and their family at all stages of illness.

Benefits of early palliative care referral

Early introduction of palliative care can improve patients’ ability to function and their quality of life and, in some cases, it may even prolong their lives. Early referral has also been shown to significantly reduce health care system costs by reducing hospital admissions and unnecessary treatments that often decrease the patient’s quality of life while providing little benefit for longer.

Unfortunately, discussions about end-of-life wishes and palliative care are rare, and when they do occur it is often too late. Patients who have these discussions early on are more likely to receive the care they want. And they are more likely to die where they choose to die, rather than in a hospital intensive care unit. Instead of being in a sterile, isolated room connected by wires and tubes to countless noisy machines at the end of their lives, palliative care patients are more likely to spend their last days in a hospice or at home with their families. It is not difficult to guess which conditions most would prefer.

Time for change

In Canada, most physicians who provide palliative care services are not specialized, lack formal training and provide these services only part-time.

The Canadian Medical Association has deemed that many medical schools provide inconsistent and inadequate palliative care training. Standardizing and improving palliative care training in the medical education curriculum would improve the quality of life for patients with life-limiting illness.

Research shows that practising physicians do not feel adequately prepared to care for patients with complex chronic or life-limiting illness. It is recommended that they pursue continued education to improve their competency. A better understanding of palliative care will enable physicians to identify when patients may benefit from this care and will increase early referrals. Learning this approach to care may even help physicians in caring for the psychological, social and spiritual needs of their patients who do not have life-limiting illness.

Furthermore, BC should update the Medical Services Plan definition of palliative care so palliative care is available immediately after diagnosis of a life-limiting illness and can be incorporated alongside treatment of underlying conditions. Although some physicians may already ignore these eligibility requirements and refer their patients to palliative care anyway, changing this policy will reflect evidence-based best practices and may encourage other physicians to integrate a palliative approach earlier in the care of patients.

Ontario may be far ahead of BC in this policy, but these policy changes will not be enough. In order for all of Canada to truly benefit from this new approach, all health care practitioners caring for patients with life-limiting illness should be educated in the palliative approach to care. Furthermore, misunderstandings about the palliative approach by patients and health professionals must be addressed.

We all need to think of the palliative approach to care as a more holistic approach to medicine, one that places equal value on quality of life and on life itself. We have the potential to improve quality of life for people with serious or life-threatening illness, while also reducing health care costs. To ignore this potential is nothing short of a failure in our health care system.