Challenges of advocacy

Many people shy away from talking about end-of-life issues or creating wills or putting together plans for awful eventualities, but Sandy and I talked about those things throughout our relationship. In part, we were motivated by the lack of protections we had because we weren't able to marry. For example, until we got registered domestic partnerships in the state of Washington in 2007, Sandy had no legal status in relationship to me. Her mother and father were her legal next-of-kin, followed by her siblings, and then their children, and so on. There was no place in that line-up for me. That changed in 2007, when our registered domestic partnership finally gave us next-of-kin status for each other. But that protection was limited to states that honored domestic partnerships; most states don't. Our legal documents remained vital to us whenever one or both of us traveled.

We probably would have talked about the end-of-life stuff anyway, because I love to plan for emergencies; it's sort of a hobby for me. I also wanted to make sure my father would have no say in my care and would receive nothing from my estate. I last spoke to him in 1986, and would have ceased communication with him earlier if I could have. Sandy, too, didn't want her father popping up at the last minute and trying to exert some authority over any important decisions.

So we covered the standard things: living wills, actual wills, powers of attorney - both medical and financial. We carried cards in our wallets that declared our relationship and asked that we be treated as spouses in medical emergencies. And after we registered as domestic partners, we carried the wallet cards that proved we had legal rights.

But there was a conversation we had repeatedly that was a little off the beaten track, even for an emergency planning enthusiast. Very early in our relationship, Sandy solicited a promise from me that I would never let her continue living -- that I would end her life -- if she wasn't present for her life. She didn't want to live if she didn't know whether she was happy or not, or whether she'd been happy half an hour ago, or whether people she loved had come to see her. Her brain, and all that it meant for who she was, was vitally important to her, and without cognizance, she didn't want to live.

The first time she brought this up, I was hesitant to make the promise. Could I, in fact, kill her, even if I knew it was what she would want? Over the years, as we had the conversation repeatedly, I grew to understand the nuances better and gained a better sense of what was and was not acceptable to her. And because I respected her vehemence and her priorities, I was willing to accept the responsibility of ending her life for her if she was unable to live what would be for her a meaningful life.

After the metastatic cancer diagnosis in May 2010, we began to have another type of conversation. She was afraid of being in terrible pain and not being able to do anything about it. We talked about the death with dignity pills, and agreed that if she qualified, she'd want them. And I agreed to help her end her life if those pills were not available to her and the pain was unbearable, with no relief possible.

In the last few months of her life, she did have unbearable pain. One night in early June, she said at 3 a.m. that she'd use the death with dignity pills right then if she had them; in the morning, she felt better and said it was a good thing she didn't have the pills. In fact, she said, she would impose a rule that she couldn't take them in the middle of the night. I said, how about I take custody of them - you're in control but I can enforce whatever guidelines you come up with. We agreed to that plan.

I'm sure some nurses and maybe even some family members or friends thought me cruel in the last five weeks of her life, when I tried to limit the pain medications she was receiving at various times. Especially in hospice care, pain relief is just about all they can offer a patient. But the pain meds they had to offer weren't helping with her nerve pain, and repeatedly, she went into narcotic fogs, losing entire days due to the effect of the meds. I was desperately trying to help her be present and free of pain; it was a nearly impossible balance to achieve with cancer in her nervous system.

I had been taking care of her the last year of her life, but we were a team. I did the research and came up with the options; she chose the path she wanted to take. She weighed the costs and benefits of everything she did. Even though she complained about the pills daily, as if I were a horrible pill taskmaster, she'd agreed to take each of the pills in her case (and declined others). There was a huge emotional toll on me, helping to manage her medical care while also dealing with my own stress and fear, and while helping her process hers, too. But we worked through it together. When I was afraid, I told her; when she was afraid, she told me. When one of us had doubts about the medical plan, we evaluated everything together and figured out a new approach.

Mindy was a huge help when Sandy wasn't lucid, but also in
helping to make sure things went as smoothly as possible
when she was. She also has the kind of calm, positive
presence that's very useful in a hospital setting.

Suddenly, then, in June, when she was confused and no longer lucid, I was the one making all the decisions. Alone. Having to determine what she'd want and what I'd advise and what we'd eventually conclude together. Sometimes with very little time to think through it. Her sister was with me for the scariest conversations with doctors, and that was a huge help. But I really wanted Sandy there, saying yes or no or voicing her concerns.

I was so relieved when she was coherent again, able to understand what was going on, able to participate in the process. I knew it didn't change her prognosis, but I was no longer solely responsible for her care. She could chime in; she could have the final say. Nurses had gotten so used to asking me things that I constantly had to tell them to ask her when she was capable of handling their questions. And it felt good to step back and let her speak for herself.

She was very angry with me for what she perceived as my taking the nurses' side or putting limits on her when she was unaware of her own physical limitations. And I'd have been angry, too. But she approved of the decisions I'd made when I was the one in charge, when she was unable to approve medical procedures. As soon as she could handle it cognitively, I'd tell her what had happened (approving radiation; keeping the information about the cancer in her spine from her until she was fully back; requesting treatment on the day we transferred to Bailey-Boushay). The times I had to speak for her, she agreed with what I'd done. It was only in the gray times, when it wasn't clear how well she could make decisions for herself, that she got angry.

When she was in pain and coherent, she could advocate for pain meds herself, and she did. But when she wasn't lucid, I had to advocate for her. And since I'd heard for years (over and over and over) just how important it was to her to be present for her life, I prioritized lucidity over pain relief most of the time. On bad days, I revisit each decision I made, and wonder if it was the right one. I wonder whether we should have stopped radiation sooner, why I didn't research nerve pain medications earlier, how much better her quality of life would have been if I'd pushed back on recommended narcotics or given in to doctors' advice at other times.

We'd talked about the importance of her knowing what's going on in her world; we'd talked about her fear of pain. We hadn't talked about what happened if the two were pitted against each other. And as well as I knew her, as much as we'd talked about all of this, and as competent as I felt interacting with her doctors and nurses, I still wasn't ready to make the decisions for her medical care. It was both a privilege and an overwhelming responsibility, and one I'd never actually thought I'd have to experience. And clearly, one I haven't recovered from yet.