Even in death …

We can learn much about our health and social systems by looking at demographic patterns related to access and uptake of services across our communities and the outcomes these variations deliver. ¹ These patterns relate to our gender, where we live, the education we received, and the income we generate and are strong predictors, at a population level, of many health and social outcomes during life.^2,3 Such outcomes include morbidity during life and ultimately our life expectancy, whether measured absolutely or by disability adjusted life expectancy. ⁴

Sadly, it comes as no surprise that even in death the service and clinical issues affecting the dying person and their caregivers maintain the sociodemographic divides that are seen in rest of our lives. These differences are ruthlessly and predictably delineated by a few key population-wide factors. ⁵ The questions have to be asked: Why is such variation seen in countries that invest large proportions of their resources on health and health care? How should hospice and palliative care services respond to these data?

The paper by Johnson and colleagues in this edition of Journal of Palliative Medicine highlights another measured difference between groups of people within our communities—the working knowledge of hospice and palliative care across the community. ⁶

Our role in hospice and palliative care cannot be limited to ensuring equity of access to the services we offer. It could be argued (aside from those services that limit access to care by diagnosis or prognosis) that most services already strive to achieve this. The goal, as in other areas of health care, needs to be about equity of outcomes : for the person dying optimal symptom control, psychosexual well-being, spiritual support; and for the caregiver while in the role and having subsequently relinquished the role, physical and emotional well-being. Optimal outcomes will not be achieved across the community for people dying unless there is a concerted effort by hospice and palliative care services to reach out to people who, because of their demographic characteristics, are less likely to realise the benefits available from support at the end of life.

If we believe that palliative care services offer benefits to the individual,^7,8 their family and friends,^7–9 and to the health system ¹⁰ that would not otherwise be experienced by that person without hospice or palliative care support, then the responsibility of every hospice and palliative care clinician and service provider is to ensure that the people who most need these services have the highest likelihood of deriving benefit from them. It is no longer sufficient to say that the service is available, but an explicit requirement for service providers that people with progressive life-limiting illnesses are adequately and systematically assessed for unmet needs by our health and social systems, and those who would most benefit referred on to specialist hospice and palliative care services.

In the evolution of hospice and palliative care services, for some service providers and clinicians this is a frightening shift. It is asking that hospice and palliative care shift from being a social good (a salve for our community's collective conscience) to an integral part of delivering quality health outcomes particularly to the most vulnerable and disenfranchised in our communities. In some settings, this potentially shifts hospice and palliative care from a middle class health “option” to a whole-of-community health service that must actively break down many of the barriers that people will have experienced during their lives.

As the successes of excellent hospice and palliative care services become more widely known across our communities, why won't our communities increasingly expect that the improved outcomes that can be delivered to some people at the end of life be delivered more systematically to those who most need them? An “option” of access to hospice and palliative care services easily becomes an expectation if that care is delivering better outcomes. As such, the success of systematically delivered end-of-life care dictates that it must evolve if it is to meet the community's changing expectations. Inequity in the quality of care at a population level while dying is a cruel reflection on the inequities experienced during life. Even in death such differences persist.