The case for palliative care advocacy: Much ‘more’ to be done

Katherine Irene Pettus, PhD, Advocacy Officer, International Association for Hospice and Palliative Care

Dr Katherine Irene Pettus

Clinicians will only be able to banish the brutal words “nothing more can be done,” from their vocabulary when palliative care is universally integrated into public and private health healthcare systems and made “as available as air,” as one of my Ugandan colleagues recently put it.^[1] The palliative care approach ensures that more is always done for patients and families experiencing the trauma of serious illness and death. Multidisciplinary palliative care teams are trained to relieve pain and provide symptom control, and to offer social and spiritual support for patients and families. Institutionalising the adequate provision of such services, however, in the rich and poor countries alike, calls for a politics of palliative care, one that is articulated and promoted in the public square.

A politics of palliative care sends the political message that integrated palliative care services support quality of life and resilience in patients and families: when pain and symptoms are under control, patients can do much more for themselves, even returning to work, taking care of children, and completing unfinished personal business. In the resource-restricted countries, palliative care is imperative, since most patients often lack any treatment options at all. Pain and symptom control given in the home or hospital means, at minimum, a blessed reprieve from agonising suffering, the possibility of continuing to provide for the family, and of better quality of life until the end. And in the sites where palliative care teams provide legal services, patients can make basic wills and ensure that their property is passed on according to their wishes. (See article in IAHPC Newsletter).

Palliative care is no longer an insurgent movement at the margins of hospital culture. In order for it to benefit society as a whole, though, advocates must educate and organise voters to require their elected representatives to develop palliative care programs in their districts. Without such pressure, rational policymakers will mirror the sterile “nothing more can be done” clinical approach that condemns the frail elderly and terminally ill patients to abandonment and neglect. Policymakers who are not exposed to palliative care advocacy, are vulnerable to constituent calls to legalise physician-assisted suicide. Electorates in the upper-income countries are already responding favourably to citizen-led movements for euthanasia and “death with dignity.”^[2]

Politicians need civil society advocates familiar with the need for palliative care in their electorates, to walk them through the necessary steps between acknowledging that plenty more can (and must) be done for patients and families, to actually drafting regulations and estimating budget appropriations. The learning curve is a long one for all, as it concerns the institutionalisation of new services in entrenched policy arenas. The national, regional, and international palliative care organisations are policymakers’ natural, and crucial, partners in this effort. They initiate, encourage and sustain the policy integration process.

Advocating for, and integrating palliative care into public health systems, asks societies to adopt a more compassionate attitude toward their most vulnerable members, whose personal stories provide the human face of the requisite cultural shift. Focusing our policy sights on the situation of our seriously ill neighbours nurtures the collective emotional intelligence of modern societies, orienting them towards sustainability and resilience. This in turn builds the intellectual bandwidth that allows communities to solve other complex issues such as migration, global warming, and food security. It’s time for a ‘palliative care peace corps’ to bring the ethos of volunteering and best practices to all parts of the globe, particularly the less developed countries.

These are big claims for palliative care – the “medicine of the future” in the words of my friend and colleague Dr Carlos Centeno. The palliative care pioneers developed the clinical knowledge base to take the discipline to the next level: what is needed now is the leadership to train and support professional advocacy teams to interface productively with local, national, and international policymakers, and to anchor that knowledge base in everyday practice.

References

1. Dr. Jacinto Amandua, Plenary Speech, Palliative Care Association of Uganda Conference, Kampala, August 2016.
2. Aviv, Rachael, Letter from Belgium The Death Treatment. When should people with a non-terminal illness be helped to die? 6/22/2015 The New Yorker.

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