Patient solidarity and the saving grace of palliative care

Categories: Care.

The English word ‘solidarity’ derives from the French solidarité, or: “communion of interests and responsibilities, mutual responsibility,” from solidaire “interdependent, complete, entire.”

Historically, the concept of solidarity in the context of healthcare policy has referred to how “communities of mutual recognition” translate this sense of interdependence into publicly funded healthcare policies.

The National Health Service in the UK, and most European health systems, both developed after World War II, are based on principle of solidarity.

In practice, however, healthcare systems based on solidarity are the exception rather than the rule. The fact that less than 14% of the worldwide need for palliative care at the end of life is being met[1] reveals a severe solidarity deficit in the relationship between governments and their citizens.

The UN General Assembly set the Sustainable Development Goals (SDGs), or Agenda 2030, last year, to help countries remedy such solidarity deficits, which prevail both within and between countries. 

The SDG that is most directly relevant for people accessing healthcare is, of course, ‘Goal 3: ensure healthy lives and wellbeing for all at all ages’.

Each goal has its own targets, and Target 3.8: ‘Achieve universal health coverage (UHC), including financial risk protection, access to quality essential health care services, and access to safe, effective, quality, and affordable essential medicines and vaccines for all’, defines patient solidarity – publicly funded policies that support patients and families.

UHC[2] includes palliative care, which requires adequate access to such essential medicines as morphine for the relief of severe pain and dyspnea.

Morphine, an essential medicine regulated by the international drug control treaties, is unavailable in more than 75% of the world.[3] 

Advocacy to remedy this egregious inequity in pain control within Goal 3, among others, is an instance of patient solidarity.

Target 3.8 is particularly important for resource-poor settings with inadequate or absent social support systems and lack of pain relief.

In such contexts, patient suffering directly affects caregivers and families, draining financial resources to pay for futile medical interventions or inappropriate traditional remedies.

UHC-supported palliative care overcomes that solidarity deficit and builds fiscal responsibility into national healthcare policy by institutionalising appropriate services for patients and families, and prioritising dignity and quality of life.

In wealthier countries, solidarity deficits marked by lack of publicly provided palliative care and UHC, translate into increasing public support for euthanasia and physician assisted dying.

Citizens and taxpayers see these procedures as rational options if their only choice is between costly futile treatment and abandonment to a prolonged painful dying process without expert and compassionate support.

In the absence of robustly integrated palliative care under UHC, both the right and the duty to die will become normative – mainstream, rational choices for individuals families, and healthcare institutions.

Patient solidarity as a core principle of health policy ethics reduces the chances of producing such a dystopic future.

Although palliative care is not the antidote to euthanasia and physician assisted suicide, wholesale grafting of palliative care into health systems, from basic to tertiary services, will blunt the popular appeal of the euthanasia and physician assisted dying campaigns whose momentum is fuelled by fear of loss of autonomy and control. 

Palliative care acknowledges this loss of control and the vulnerability at the end of life but makes clear that: “You matter because you are you, and you matter to the end of your life.”[4]

By focusing on patients’ and families’ goals of care rather than illusory cures, palliative care actually restores autonomy and honours the principle of informed consent. Patients can take care of their affairs and spend the last chapter of their lives in relative peace.

Finally, solidarity for palliative care patients entails care equity, so that all those suffering from life-limiting illness – not just cancer patients – can receive appropriate care and pain medications.

It also means global equity, bridging the gap between the patients who have access to palliative care, and those who do not.

Patient solidarity would ensure that all children, adults, and older persons who need palliative care would receive it, and would live well, in dignity, until the natural end of their lives.

Achieving this goal will take dedicated, funded, advocacy around the SDGs, UHC, and the imperative of integrated palliative care.

References


[1]WHO, (2013) Global Atlas of Palliative Care at the End of Life  http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf

[2] Universal Health Coverage is defined as: “ensuring that all people can use the promotive, preventive, curative, rehabilitative and palliative health services they need, which are of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.” World Health Organization website – http://www.who.int/health_financing/en/ 

[3] International Narcotics Control Board (2016). Special Report: Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes. Available at: https://www.incb.org/incb/en/publications/annual-reports/annual-report-supplement-2015.html

[4] Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement.