An important conversation
Jane and I were not obsessed with death. If anything, we were too busy living to spend much time on the subject. But once every year we took a portion of a day to talk about life-threatening medical issues and what we wanted done if we were incapacitated for some reason in a way that left us unable to make end-of-life decisions for ourselves.
Have the conversation.
That discussion became considerably more intense in the days leading up to the surgery to replace the valves in her heart the NET cancer had destroyed. At the best of times, those conversations had been difficult. But we saw them as necessary long before we heard the word carcinoid–and they became even more necessary as her disease progressed.
We all live with death
Neither of us feared death. Nor did we see it as an immediate threat when we first began having those conversations in the months before we got married. Death, for us, was a piece of life–but a piece of life in the distant future. That didn’t mean we did not prepare for it as best we could. Neither of us wanted the other to have any questions about where the lines were, though, if it came on sooner than expected.
Jane and I were not obsessed with death.
As I wrote recently, death is one of the elephants in the room for NET cancer patients. But it is an elephant in the room for most Americans. It is a thing very few of us are comfortable discussing. It is as though we think that by not talking about it, we can avoid it.
Knowledge matters
After Jane’s surgery, she spent four weeks in a cardiac intensive care unit. On three separate occasions, I had to make decisions about her care because she was not in a position to make those decisions. Someone who is comatose can’t answer questions about her care. I was very glad we had discussed, as precisely as inexperienced people can, what it was she wanted done under those circumstances.
Neither of us feared death.
I discovered that the land at the edge of death is far more murky than either of us could have imagined. We had seen it as a place with clear black and white boundaries. We could not have conceived the number of shades of gray that inhabit that place until we had seen them. If intubation will buy the time it takes to solve the riddle of potentially life-ending falling blood pressure and respiration, is it really an “heroic measure?” And when the only thing keeping the body alive is a pacemaker, is there a point to letting it continue to circulate the blood?
Decision-making about care
Despite all the conversations we had about what to do, none of the decisions I confronted in those final 28 days was easy to make. But I cannot imagine having to make them without those conversations we had about where Jane saw lines–about how and when she wanted her life to end. I tried to honor what she wanted–which was not necessarily what I wanted.
…the land at the edge of death is far more murky…
Yet I also know that the vast majority of the patients on that floor had never had a conversation with anyone about what they wanted the end of their lives to look like. Nurses and doctors told us over and over how lucky we were to have discussed those issues–that two-thirds to three-quarters of the patients in that cardiac unit had never had a conversation with anyone about what they wanted if they were in a coma with no hope of recovery.
Knowing where the lines are
And I saw the results of those failures to communicate on this vital subject. The husbands’, wives’, sons’ and daughters’ plaintive tears and cries are etched on my brain forever. They didn’t know what to do–and there was no one who could legally–or morally–tell them.
I tried to honor what she wanted…
Jane and I drew our lines in different places than others might–than, likely, you who are reading this will. That doesn’t matter so long as you–as caregiver or medical proxy–know where the lines are for your loved one–and you are willing to carry out their wishes. The only way to know those things is to have that awkward and difficult conversation about end-of-life issues–and I’m not talking about funerals and burial plots.
The conversation matters
If you have advanced NET cancer you owe it to the people you love to have a frank discussion about when it is time to let you go. If you are the caregiver for a patient, there are things about what that person wants that you need to know before they are unconscious and unable to communicate their desires. You can only get that information by talking with them about those realities–no matter how uncomfortable that discussion makes you both.
I’m not talking about funerals and burial plots.
When Jane was in her first coma, someone told me she would awaken from it–but that at some point I would have to make a decision about letting her go based on the quality of life she would have if we continued. When Jane descended into her last coma, one of her doctors reminded me of what we had both said to all of them over the preceding weeks–that when a fighting chance became no chance, that it was time to make her comfortable and let her go.
The value of knowledge
So I did. And I let her go with a clear conscience, knowing she was going to Death on her own terms.
You can only get that information by talking…
The days since have not been easy. I miss her every day. But I know things would have been far more difficult if I had not known what she wanted.
BRAVO!! So nicely said and so heartbreakingly true!! I lost my husband a year ago from NETs and our “conversation” was so important, filled with a great love and respect for each other, and sometimes difficult…but so valuable for both of us
Thank you for your kind words. This was a piece I worried about a bit as I wrote it because it contains some uncomfortable advice. I hope your comment will help convince others that this is an important conversation to have before it seems absolutely necessary.
There is an expectation that people have these conversations about what should be done when most people are ill equipped to make the various types of decisions because of lack of knowledge about the end of life, the death process, the various medical interventions available and when to use them and trust that medical personnel are making the correct determination about the prognosis. A conversation is important but as an advanced cancer patient I find doctors are missing from this conversation and where should people turn to make truly informed decisions?
This gets into the shades of gray problem Jane and I did not expect to encounter. We thought we had a pretty good grasp of the medical side of things at the time of her operation–and clearly, we didn’t have as good a grasp of things as we thought we did.
I absolutely agree that doctors need to be a part of the conversation–especially with the pace of change in terms of what we know and what we can do. Jane’s doctors were enormously helpful, once they understood we wanted and needed them to be honest with us about what was going on. Knowing what I know now, I wish they had been more involved in the process from earlier on.
Unfortunately, doctors are very reluctant to tell you what you should do–or what they would do in your position. I understand that reluctance, given the legal issues they sometimes face. For example, a DNR loses its legality if the doctors stop your heart intentionally during heart surgery and then restart it. Because restarting the heart constitutes an ‘extraordinary’ measure, you have to waive the DNR to have the surgery. I’m not sure at what point Jane would have been fully mentally competent to sign a new one.
And the furor over Obamacare’s coverage of conversations with a doctor over end of life issues hasn’t helped matters.
But, honestly, had we asked them into the process earlier, I’m not sure we would have known what questions to ask them. Until you’ve been there, it is hard to comprehend how fuzzy things can get.
The good news, for us, was that we had put in place through our conversations with each other the broad structures that helped me understand what Jane wanted so that I could then place those wishes in the context of what her doctors were telling me about her condition and longterm prognosis.
Ultimately, doctors do not have the legal authority to make the decisions about end of life issues. Nor can they ethically make those decisions. Ultimately, the patient, spouse, or medical proxy has to make those decisions. While medical input is important–and I’d love to see more of it–familial conversations about death need to happen so that the caregiver can make a fully informed decision about what to do that includes the wishes of the unconscious patient.
But your point is equally well-taken and valid. We need to create an atmosphere in the medical and legal communities that makes what you want–and I want it, too–easier for doctors to do.