Measuring the Net Benefits of Hospice and Palliative Care: A Composite Measure for Multiple Audiences—Palliative Net Benefit

As a sector, hospice and palliative care services have been poor at “selling” their benefits to funders and the community more broadly. As a sector, we need to do better, be smarter, and ensure we are delivering a handful of key messages on behalf of the people who benefit from our services.

To date, no one single outcome measure has been developed that captures the net benefit of involving hospice or palliative care services. Yet funders are looking for reasons to justify the investment in these services (or, more frighteningly, to disinvest).

The benefits from provision and receipt of palliative care should be captured from the four main stakeholders: patients, their caregivers, involved clinical staff, and the health system(s) through which that care is provided. In this edition of the Journal of Palliative Medicine, Smith and colleagues explore the issues which are important to caregivers when reflecting back on the death of a loved one. ¹ Although 14 domains were explored covering the last month of the person's life and one global rating was subsequently assessed, the data make things clear. First, there is wide variation even among bereaved family members about what constitutes quality care at the end of life. Second, the factors identified by caregivers may differ from those identified by patients and health professionals; such differences have been reported before. ² The important contribution by the work of Smith and associates is that it begins to quantify and to weight the relative importance of key aspects of care at the end of life by people who have experienced (as recipients of care themselves from hospice and palliative care services) and provided that care (as caregivers for people who are dying).

Globally, there is an urgent need to integrate the documented benefits (and burdens) that result from timely referral to hospice and palliative care using data from all four stakeholders: patients, caregivers, health professionals, and the health system. ³ These data should be integrated into a single composite outcome profile if hospice and palliative care is to provide process, outcome, and cost data to advocate for vital current and future resources. Such a measure, if carefully constructed using good science, would be able to provide robust data to reflect on the benefits of palliative care from the viewpoint of each stakeholder group. From a patient's point of view, this may include effectiveness of pain and symptom control, in part translating into independence for as long as possible, and the benefits of good psychosocial and spiritual care. For caregivers, the contribution to a composite measure could include the health, survival, and well-being of caregivers related to their ability and willingness to provide informal care, demonstrated better maintenance of their long-term health, and willingness to provide such care again in the future should such a need arise.^4,5 Excellent communication, which includes appropriate, tailored, and timely information, is important to both patients and caregivers. From a health service point of view, such a composite outcome profile would include utilization of health services both from inpatient and community settings, and cost effectiveness of high-quality hospice and palliative care that does not compromise survival. ⁶ Such data would need to honestly reflect the often ignored costs of informal caregiving by whom most care is provided at the end of life.

Such a measure of palliative net benefit would need to offer optimal applicability and utility, transcend individual health service design, and reflect the diversity of expectations, hopes, and experience of people. Such a measure would also need to be able to be adapted to the variety of ways services are delivered by differing health systems and at a local level around the world. The science of patient-reported outcome measures has advanced significantly with validation and adoption of tools such as the palliative care outcome scale (POS) ⁷ or other scales that are complied using the core measurement principles. The challenge is to retain the best science and utility from measures for all stakeholder groups and identify a core international composite gleaned from collection of consistent, reproducible, and reliable data, amalgamated into a composite endpoint reflective of the best available evidence and widespread consensus.

Given that it may be possible to create a single composite score, will this help in furthering the goals of good palliative care? Funders do want to provide the best possible care for people in the most cost effective way. To do this, there must be an ability to define the net benefit of any such investment. To date, the hospice and palliative care clinical community has failed to articulate the strength of its case for funding for quality of care in ways to which funders can easily relate, and by which they will be persuaded to allocate their finite health and social care budgets.

Other areas of clinical practice have achieved this in the last 4 decades such as in HIV/AIDS (in the rapid and widespread availability of new and emerging medications) and cardiology (in establishing coronary care units). It is vitally important for hospice and palliative care services to take these same important unifying steps to establish a more sustainable funding base that can truly deliver for the needs of the patient population that we serve. What will be important is ensuring that the key domains that reflect the multidimensional benefit of referral to hospice and palliative care are captured systematically, from the perspective of each stakeholder group, to allow a single voice in advocacy. Failure to do so will threaten the long-term sustainability of the programs in which we all invest on a daily basis.