Palliative Care in the Tennies: What Can We Expect?

The ancestors. The shadow people,

Who now and then lean softly from the dark

And stroke on chin or thumb the new generation.

—U.A. Fanthorpe British Poet (1929–2009) From Haunting, in Safe as Houses. Peterloo Press, UK.

As we move forward from the “noughties” into the “tennies” palliative care will continue to expand its global reach bringing new generations of services, treatments clinicians, volunteers, patients and families. One strength of palliative and hospice care is the way these have evolved to work within the varied systems and cultures in different countries. However, the downside of this variation, is that it is difficult to compare care, and there is no “international standard” of best palliative care. Furthermore, as hospice and palliative care move further from their origins, some of the founding principle may be lost. ¹ Consequently, there is much to learn from the variations. Just as health care systems are now looking to each other to try to understand the best way to offer health care, so palliative care needs to examine different forms to provide care. We should be asking: “What is the best way to offer care? What are the best treatments? How and when are they best provided?”

In many countries palliative care and hospice care is a mixed economy. In the United States there are for-profit hospices, voluntary hospices, and government-owned hospices, and some of these are potentially competing with each other. This strong for-profit presence is unusual worldwide. The roots of hospice and palliative care are the voluntary (charity, nonprofit) sector. The word “hospice” was first used in the fourth century when Christian orders welcomed travelers and the sick. It was applied to the care of dying patients by Mme Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St. Joseph's Hospice in Hackney, London (1905). Nowadays in the United Kingdom, 75% of in-patient hospices are managed by the voluntary sector, and 25% are managed by National Health Service (NHS, government run) organizations; “for-profit” hospice or palliative care services are very rare. Community palliative care services follow the pattern of in-patients, although slightly more are NHS run. Hospital palliative care services in the United Kingdom are primarily NHS run. In many European countries there are government- and voluntary (charity, nonprofit) run palliative care units. In developing contexts, the role of the voluntary sector is central.

In this issue of the Journal of Palliative Medicine, Cherlin et al. ² examine whether the staffing patterns differ between U.S. nonprofit and for-profit hospices. There are some problems with this comparison, especially because the regions of for-profit and nonprofit hospices may be different, leading to different needs in the communities served. Cherlin and colleagues found that for-profit compared to nonprofit hospices on average were more likely to have physicians among the paid rather than voluntary staff but employed a less professionalized mix of nurses and of psychosocial staff counselors. In the face of an expanding for-profit hospice market in the United States in the last decade, this finding warrants investigation elsewhere to see if it is consistent trend, and more importantly the staffing mix needs to be considered alongside the outcomes of the hospices, so we can develop a better understanding of what is optimal.

Getting the mix of inpatient beds and community services right is another key issue, and one which also varies from country to country. Increasingly in many countries, acute palliative care units (APCUs) are being developed in acute hospitals, in addition to the local hospices. ³ This is perhaps in response to the continuing high proportion of deaths in hospitals, ⁴ and the need to be able to quickly sort out the problems of patients in the acute settings so patients can go home or be discharged to a hospice or a nursing home. Cassel et al., ⁵ reporting their experiences with an 11-bed unit in an acute hospital, found the overall death rate in the hospital was not altered, but that patients were transferred from oncology and general medical wards (but not intensive care) to die on their unit.

One of the biggest challenges for the “tennies” will be responding to the HIV/AIDS epidemic, especially in resource-poor countries. Sub-Saharan Africa, where Wakeham et al. ⁶ conducted their study, is the region most heavily affected by the HIV epidemic, with 67% of all people living with HIV and 75% of AIDS deaths. We already know that symptoms with far advanced HIV/AIDS can equal or exceed those with cancer, ⁷ and that symptoms are common despite antiretroviral therapy. ⁸ Wakeham et al., ⁶ using a widely used standardized assessment of symptoms, the Memorial Symptom Assessment Scale (MSAS), found on average 14 symptoms at diagnosis with a prevalence similar to that among patients with terminal cancer, end-stage renal failure, or cardiorespiratory disease. In these regions of the globe equally, research into the best management of symptoms, the best models of care, and to training and skilling other staff, will be critical for the future. ⁹ We will need to aim to find the new, but also to keep the best of the work from earlier generations on philosophy, management, and care.