Part of this may be cultural. African-Americans tend to have a greater preference for life-sustaining treatments — perhaps due to mistrust of the health system because of prior injustices — and are more willing to exhaust personal finances to extend life. But poorer access to palliative care also probably plays a role, and research suggests that palliative care consultations can increase hospice enrollment and completion of advance directives among minorities. Finally, many seriously ill patients don’t receive the services they need because their diseases aren’t ones we typically think of as terminal (although we should). For example, patients with end-stage renal disease, chronic obstructive pulmonary disease (C.O.P.D.) or congestive heart failure are far less likely than patients with cancer or dementia — diseases we typically associate with the end of life — to receive palliative care consultations. About one-third of patients with renal disease or cardiopulmonary failure die in the I.C.U., while only 13 percent of cancer patients and 9 percent of those with dementia do. Patients with end-stage organ failure are also less likely to receive hospice services, and their families are less satisfied with their care. As a researcher, I find this surprising. As a doctor, less so. When I see patients with advanced C.O.P.D. or kidney failure requiring dialysis, I know they’re sick. But I also know there’s generally something I can do about it — for the moment. The decline of most patients with end-organ failure is punctuated by peaks and valleys. My patient’s heart might be failing and his lungs filling with fluid, but I’ll switch his diuretic medication (it’s just Lasix, not chemo). He’ll breathe better — maybe for weeks, maybe for months — until these intervals become shorter and shorter. It’s unclear exactly when we’re approaching the end, which makes it hard to know when to involve palliative care or start discussions about hospice in earnest. This challenge is, in part, what’s prompting a push to separate palliative care from end-of-life care. Many argue that palliative care, with its focus on symptom control and holistic well-being, should be considered at any stage of a serious illness — not just at the end. Its use should be driven by patient need, not disease prognosis. This conception seems to be consistent with most people’s wishes: The vast majority of patients say they would want palliative care for themselves and their family members if understood as an “extra layer of support” during serious illness.
New research has highlighted the fact that end of life care in the US is a growing need that needs to be addressed so that every citizen receives the care they need. Patients make an average of 29 doctor’s visits in their final months, with the final month being particularly key. Around 50% of Medicare patients go to the ER in their final month, with one-third being admitted to the intensive care unit and one-fifth being taken for surgery. Medicare’s funding allocation for patients in the last stages of their lives is approximately six times that of other patients, with end of life care accounting for a quarter of the entire Medicare budget. The situation has been left unchanged for the past 30 years, leading to questions over what can be done to improve the situation. Despite conventional thinking, providing more intensive end of life care does not improve outcomes. Research has found that there are two ways of improving patients’ final weeks, and those are to have conversations about end of life care much earlier, and to offer more palliative care services. Advance planning reduces emotional trauma, increases chances of patient survival in hospital, reduces intensive care use and increases quality of life. Palliative care use has risen 150% in hosptials across the US, and the resulting change has made African-Americans the least likely to die in hospital from cancer. However, only 56% of smaller hospitals feature palliative care services, despite the growing evidence that such services are in great need. Ethnic and racial minorities are most likely to die in hospital, and are less likely to receive palliative care or use a hospice. Seriously ill patients do not receive the care they need because their illnesses – such as chronic obstructive pulmonary disease or congestive heart failure – are not perceived as being life-threatening or worthy of palliative care. These slower diseases can end with organ failure, with care mostly being given as and when needed in response to issues, rather than proactively tackling future problems.