As far as deaths go, my grandparents had excellent ones. When faced with grim diagnoses – lung cancer for my grandmother; a combination of COPD, heart failure and Alzheimer’s for my grandfather – each was clear that they wanted to be kept comfortable and, above all, at home. They each died in the chairs where they’d spent each evening for 40 years looking out over their Oregon farm.
Twenty years later, too few patients with serious illness can be confident of getting the care they want at the end. In the absence of clear direction to the contrary, the healthcare system tends to want to heal, to escalate care. While 70% of Americans report that they’d prefer to die at home, that’s about the proportion that will die in the hospital.
At every level, the healthcare system is looking for ways to reduce that disparity: The Centers for Medicare & Medicaid Services is considering reimbursing for advance care planning discussions with Medicare beneficiaries and most states now have a Physician Orders for Life Sustaining Treatment (POLST) or similar forms that can dictate how much – or how little – care patients want if they are incapacitated and near the end of life. But in every case, the issue comes back to engagement: Patients, providers and families talking about what matters most, and making sure those wishes are documented and shared with those who need to know. It’s not a conversation to have in the hallway of the intensive care unit between a hospitalist and a son or daughter who has just flown in from across the country. It’s a conversation to start early and to refresh over time as health status changes and priorities shift.
Having the discussion helps. Multiple studies show that patients’ wishes are more likely to be honored when documented and that families report greater satisfaction when the deceased’s wishes were known, communicated, and followed. At a minimum, any adult should have a healthcare proxy – someone who is familiar with their wishes if they are incapacitated – and advance directives, and providers should ask for this information and include it in the medical record. When serious or progressive illness become part of the equation, providers need to make sure they understand what matters.
Our family was fortunate. We had time to find out what my grandparents wanted, and their physicians connected them to hospice care early enough that they got the full benefit of palliative measures even as their health declined. There are many stresses to watching a loved one slip away, but neither we nor the physicians had to wonder if we were doing the right thing. Every family should be so lucky, and every patient should have the chance to stay engaged to the end – even when they can no longer speak for themselves.
Note: For patients and families, several organizations have built guides to make talking about priorities easier:
- The Conversation Project
- Aging With Dignity’s Five Wishes
- The Stanford Letter Project
- The Center for Advance Palliative Care offers education on communicating with seriously ill patients and their families.
- For providers and policymakers, the Coalition to Transform Advanced Care offers policy resources and shares best practice models.
Jane Lowers is a researcher at AIR and is conducting her master’s capstone research on end-of-life care priorities.