I usually don't go in for New Year's resolutions. Instead, I tend to regularly review my goals and aspirations throughout the year and make plans to meet them. However, this year was different because my husband and I had a task that had been on our plates for -- gulp! -- 10 years.
We needed to update our will. We had written one when our children were young but hadn't reviewed it since. Not only did it still have guardians named for them (and our son is now 30 with a family of his own), it still had our daughter in it, although she was killed 10 years ago. Actually, when we talked about it, we realized that Sarah's death was part of the reason we hadn't rewritten our will. To take her out of it was one more painful reminder.
But it was time, so we made an appointment with our attorney to get all our legal papers in order: a will, durable power of attorney, mental health power of attorney, health care power of attorney, and living will. We both had the last two done and in place, but wanted to have our living wills updated.
So we downloaded the packet from our state's website. In our state (Arizona), the living will template is very comprehensive in that it encompasses not only health care decisions but also decisions about autopsies, burial or cremation, and organ donation with a place where one can add additional directives about what he or she does or does not want in terms of medical interventions. We wanted to have that completed before we met with our attorney.
We had quite a list on that "additional directives" section: for example, not wanting interventions done in the case of a massive neurological event, refusal of a pacemaker if we had other underlying life-threatening conditions or dementia, the desire to donate not only our organs and tissues, but also our bodies for science research and naming the organization we preferred to facilitate that.
The interesting part came when we met with our attorney to review our wishes so that he could draw up all the documents. When it came to our living will, he was a bit taken aback. It turned out that their practice had used a different -- still legal but much older -- document and he suggested we might use that. You probably know the one:
If at any time I should have an incurable injury, disease or illness certified to be a
terminal condition, a permanent vegetative state or an irreversible coma by two physicians who have personally examined me, one of whom is my attending physician, and the physicians have determined that my death will occur unless life-sustaining procedures are used and if the application of life-sustaining procedures would serve only to artificially prolong the dying process...
Nope, I said. Not want we want. We'd rather use the one we brought in... verbatim.
When he asked why, I explained that I'd been in clinical practice for 30 years and knew living wills quite well, as I had assisted many patients in completing them as well as families and doctors in interpreting and abiding by them. While the form their practice had was perfectly legal, it wasn't the current one recommended in end of life planning.
Besides, I said, that form does exactly what it shouldn't: It places the decision-making in the hands of two physicians, not in the hands of the patient, and it avoids any opportunity for the patient or their agent to say what they do and do not want in terms of treatment. And in my experience, getting two doctors to agree on anything in the current health care environment is very difficult.
So we went with our original document -- verbatim as we had written it.
Here are the take-aways from our "we don't do New Year's resolutions, but we need to this one" experience:
For anyone, completing legal documents, especially a will or living will, can be a task that is often put off. Many times the spiritual issue behind it may be the reluctance to face one's own mortality. For us, the spiritual issue wasn't that -- we're both comfortable with the concept of death and the care that we want at the end of our lives. Rather, our unknown spiritual distress was tied to our grief as bereaved parents. Even after 10 years events crop up that remind us of Sarah, not only her birth and death anniversaries, but things like mail still delivered in her name (yes, 10 years later and at an address where she never lived). Rewriting our will meant removing her as a beneficiary and instead naming her as deceased in it.
If you are someone like us who has put off doing your health care power of attorney, make it a resolution not for this year, but for the next 30 days. Asking yourself the question about what might be your hesitancy in talking about the issues might bring you an answer that you didn't expect.
Then look for someone -- a professional chaplain, who can be found at most hospitals or a religious or spiritual leader with experience in end of life issues who can assist you in examining those reasons for not wanting to talk about health care and end of life decisions.
The Conversation Project webpage has a wonderful starter kit for having these conversations, which you also need to set time to do with your loved ones. Their kit isn't about filling out advance directive forms bur rather conversation itself with your family, your loved ones, and your doctor.
The next step is doing your homework by looking at your state's resources and documents; many hospitals and hospices also have them available either in-person or on their websites. Online resources also include Caring Connections which has links to each state's forms as well as guidance in what to think about when completing them as well as the site for National HealthCare Decisions Day which provides numerous resources.
As I said, I usually don't go for New Year's resolutions, but I'm glad we did this one. I want my voice to be heard loud and clear if there ever comes a time when my family has to make health care decisions on my behalf. And I'm glad that we, as difficult as it was, were able to attend to our ongoing grief as bereaved parents which always crops up when it is least expected.
Now it's your turn. If you haven't, I encourage you to think about what you want for health care decisions -- and who you want to make them if you can't -- and make completing your advance directives not a resolution, but a to-do.