Palliative Care: A Life- And Choice-Affirming Alternative For Patients And Families Facing Serious Illness

03/11/2017 10:39 am ET | Updated Mar 21, 2017

Newsflash: Medially assisted dying and euthanasia are not the only options for patients facing life-limiting illnesses and serious pain. Nor are endless treatments with inconclusive or non-beneficial results, which might cost patients and families their life savings. There is another choice that aligns better with many individual and cultural values and aspirations for quality of life: palliative care.

Palliative care covers many bases. It affirms life and supports the dignity of patients until natural death. It provides services to families of all kinds and caregivers of choice, including through bereavement, and it preserves personal autonomy. Mainstreamed under universal health coverage, palliative care is the penultimate “both/and” for patients and families facing life limiting illness. Medical science and public health have created the modern, wealth induced, dilemma of mass longevity. Have we really evolved to the point that the demos (body of voters) feels it has to legalize medical killing as the only “liberty” option to resolve the inevitable pain and suffering of extended mortality?

Palliative care is a modern, secular practice, not a religious or denominational approach, although it provides spiritual care if desired. Its ethos based on life, dignity, and family, is grounded in the human rights movement, whose cornerstone document is the Universal Declaration of Human Rights. Palliative care can lay claim to all the foundational concepts in that covenant, which is why many human rights experts now call palliative care a human right for all patients facing serious illness, from neonates to the frail elderly. It is stipulated as a right in the 2015 Inter-American Convention on Protecting the Rights of Older Persons, as well as the brand new Constitution of Mexico City.

The term pro-life can be reclaimed and applied to palliative care, because it “affirms life and regards dying as a normal process” according to the World Health Organisation definition. We can also re-appropriate the term “pro-family,” because palliative care teams support all family configurations, and “offers a support system to help loved ones and caregivers cope during the patient’s illness and during their own bereavement,” also according to the WHO definition.

While we are at it, let’s also reclaim the term “pro-choice” because, when properly mainstreamed in a health system, palliative care gives patients and families a real choice about whether to continue treatment that may be non-beneficial. Where assisted dying and euthanasia are legal, palliative care gives patients a real choice concerning whether to not to end their lives. In fact palliative care allows patients to plant, prune, and harvest their own unique Decision Tree of Life together with the community of their choice.

Palliative care is pro-dignity because it supports autonomy, which is undermined, and cannot be effectively operationalized when the only available options are futile treatment, abandonment (“there’s nothing more we can do”), or legalized assisted dying. Autonomy in any meaningful sense exists only in the context of real choice. Palliative care represents the via media, the middle way that allows patients and families to steer a customized course between the treacherous shoals of futile treatment, medical abandonment, and assisted dying.

The media are full of heartfelt cries (cris de coeur) in favor of legalizing medically assisted dying, of patients and families sharing excruciating stories of being condemned to suffer severe pain and multiple indignities by callous politicians, doctors, and religious fanatics. They have a point, given that too few families and communities have access to quality, affordable palliative care. Stories about patients and families helped in their final months, days, years by palliative care teams are far and few between, no matter that they number in the tens of thousands, and can be told be providers and patients all over the world. But medically assisted dying will continue to gain political traction and social acceptance in modern democratic cultures led by public opinion, until patients, providers and families are as effectively vocal for palliative care as their counterparts for assisted dying.

Ensuring that palliative care is available as air, in the words of the inimitable Ugandan advocate Dr. Jacinto Amandua, means the palliative care community must get our political ducks in a row, something clinicians are rarely willing to do. Palliative care folks must stride purposefully out of their comfort zones to make the necessary alliances with non-medical professional colleagues. Patients’ stories have to get published, policies drafted, budget lines funded, and the providers educated and accredited.

What’s not to like about such a modern, evidence based, pro-life, pro-choice, pro-family, pro-dignity, and pro-autonomy healthcare option that’s not against anyone, and sees no other movement as “the enemy”? Palliative care’s only mission is to provide impeccable clinical, spiritual, social, and existential support and affirmation at the most vulnerable, sacred, fearful, and stressful time imaginable. It’s past time to take palliative are to the demos, where it belongs.

CONVERSATIONS