by Rees Robinson
I am a Speaking of Dying Workshop Facilitator. This summer, I interned in the Spiritual Care department at Harborview Medical Center in Seattle. Harborview is a King County hospital and Level 1 trauma and burn center serving Washington, Idaho, Montana and Alaska. People, of all ages, are flown to Harborview after suffering trauma that most hospitals aren’t equipped to handle. Patients often arrive unconscious after suffering strokes, heart attacks, life threatening accidents, gunshot wounds, fires., etc. In large part, those admitted did not expect to end up at Harborview when they woke up that day. Many arrive unable to speak for themselves. Harborview is a unique institution and one that strives to provide patient-centered care. The thing is, patient-centered care requires that the patient’s wishes be known. What I learned from my Harborview experiences this summer is that it is not dying in a hospital that should be avoided or feared; rather, it is being medically treated without having your wishes and values known and honored.
I believe the most important thing all of us can do, no matter what our age, is to choose a health care agent who is able to communicate our preferences for care if we are unable to do so. The person we designate must be someone we trust to be our voice, even when our preferences might be in conflict with their own. If a patient has not spelled out or designated a health care agent, their living next of kin will be authorized to make medical decisions on their behalf. First next of kin would be the patient’s spouse or registered domestic partner. Next come the adult children, followed by parents and adult siblings, in that order. If more than one person falls in a category, all must agree on the decisions made. Can you imagine the challenges this could create? Documenting your choice of health care agent is vitally important, particularly if you don’t want it to fall upon the state mandated order of representation. For instance, if you have children (no spouse / partner, parents), will your children make the decisions you would make? Will they all agree?
I witnessed many examples at Harborview this summer. I’ll share two of them with you: There was an unresponsive patient admitted to Harborview, a woman in her 30’s. She had a devoted significant other. He didn’t get along very well with her family, whom she hadn’t been in close contact with. Since the patient didn’t have a health care power of attorney naming an agent, the patient’s mother was given the authority for making medical decisions. Her significant other was completely left out of the decision-making process and would leave the room when family members were present. It’s possible her significant other may have known the wishes of the patient better and would have honored them with decisions different from the ones the family made.
In contrast, there was a 70-something-year-old man admitted to Harborview, who had designated his two 20-something year old neighbors as his health care agents. They were able to stand by him when decisions were made to stop curative treatment and begin treating him only for comfort. This man choose these two young women he knew he could trust and therefore he was able to die peacefully in the way he wanted, surrounded by love, and without family drama.
Besides designating someone as your health care agent, or even if you are OK with the responsibility falling to your living next of kin, you have to do your best to let them know what is it you would want. Do you even know what you want? Do you know what the options are? How much foundational information have you given the person who will speak for you if you’re not able? Does your agent have sufficient documentation backing up in-depth conversations so they can make decisions on your behalf in crisis, even in the face of opposition? This not straight forward or easy! End-of-life Planning workshops provide you with information and tools for having the conversations and writing your own advance care directive. Such workshops are truly a gift to yourself— and to your loved ones and survivors. Doing this work is not something to be put off until later. None of us know what might happen—at any age. The crystal balls are all on back order.
Rees Robinson is a facilitator of Speaking of Dying workshops and a Certified Sage-ing Leader with Sage-ing International. You can reach her at email@example.com .