No one likes to think about getting sick. But multiple studies show that there is less drama and discord when families spend more time on end-of-life planning. The financial benefits are also significant: 25% of health spending occurs in the last year of life, so why not start thinking about how you would like those dollars allocated?
Most of us have seen older family and friends get, well, older. Some of those transitions have gone well. Some have been disastrous. Conflict arises when patients (or patients’ families) have unreasonable expectations about health status, prognosis, and treatment options. These difficult negotiations are made all the more challenging in the midst of a patient’s severe illness. The stakes are high, sleep deprivation is common, and family relationships are complex—your own little domestic version of Survivor. And just like the famous TV show, the ending is often a surprise to everyone.
While surprises make for entertaining TV, they make for miserable health care planning. Your end of life plan should feel more like PBS NewsHour than The Jerry Springer Show. We’re here to help you make that transition dignified, orderly, and, above all, in your best interests. But we don’t know what those wishes are until you share them with us and your loved ones.
Health Care Planning Steps:
Talk with your family (and your doctor) about your preferences for end-of-life care.
You might even want to have that discussion together as a group and document the conversation. This would be the setting to “flesh out” the Advance Directive and POLST forms (see below), and is the best time to make clear why certain choices have been made. It’s a great opportunity to get everyone on the same page before there is a crisis. Remember, your plan on paper is only as strong as the family around you who are willing to uphold your wishes. Every doctor has witnessed unfortunate end-of-life scenarios where patients’ wishes were not honored — usually because family disagreed with the patient’s choices and did not understand the reasoning behind those choices.
Complete an Advance Directive, regardless of your current age or health status.
This document allows patients to appoint a health care representative (Power of Attorney for Health Care) and to identify a set of conditions under which they do, or don’t, want to be kept alive (a Living Will).
The trouble with the Living Will is that the default set of health conditions on the form are so plainly black and white as to be almost useless. Basically, the writers of the document took the easy road and chose these four conditions to highlight: close to death, permanently unconscious, advanced progressive illness that will be fatal, and extraordinary suffering.
Talk about taking the low-hanging fruit — is there anyone who would choose life support in the setting of permanent unconsciousness, or extraordinary suffering? Reality is often much more fluid, and prognosis is frequently opaque. I’m talking about the patient who comes in with a rapidly progressing infection and can’t eat, drink, or speak. How aggressively should we treat them? Can we use antibiotics? IV fluids? Feeding tubes? And for how long?
Thankfully, the Advance Directive also comes with the option to build your own scenarios. This is harder work, but extremely helpful for your decision-makers if you flesh out some basic conditions. Think about the minimum quality of life you would want for yourself. What makes life worth living for you? For some, it’s being able to appreciate the company of friends and loved ones. For others, it’s maintaining certain abilities like reading, listening, or eating.
Complete a POLST form if your health status is more fragile.
It’s usually clear to patients and their families when that time is reached, but examples might be patients who are hospitalized multiple times per year, or whose life expectancy is less than one year. POLST stands for Physician Orders for Life Sustaining Treatment. The first POLST in the country was actually developed right here at OHSU. The POLST is easily shared with others (it’s only a single page) and can be registered with the state of Oregon so that emergency medical personnel can know your wishes too—even if you cannot tell them at the time of need. It fills in the gaps left by a Living Will to cover the more common situations, like respiratory and cardiovascular emergencies.
Above all, remember that we’re here to help you. Come talk with us!