Taken Off Service
Occasionally, a patient is taken off our hospice service or specifically removed from the volunteer visiting sub-service. The reasons are varied. Sometimes patients are remarkably better and will live well past the six-month limit Medicare places on hospice. Other times, patients will decide that hospice is not for them and want to continue fighting their disease. Occasionally patients may become less amenable to visitors because they feel tired or embarrassed that they can no longer participate as they used to. Though we often visit with patients who can no longer join us in conversation, we have to respect the patient's wishes, even if we feel there is more we can do for them. In hospice care, the patients are in control and their needs always come first. Still, it can be saddening when one can no longer visit with a patient to which one has become attached. How I approach my patients helps me deal with the occasional patient I don't get to see all the way to the end of their time in this world.
“Death is not the opposite of life, but a part of it.”
Death is not the only way that we lose patients in hospice care. There are situations when hospice is not the right fit for a patient. Sometimes, patients no longer want volunteers as they turn inward to experience their dying. I've become attached to patients who subsequently left the service or decided they just wanted to be as alone as possible in their final days. This can be a letdown to experience as a volunteer, especially if one sees real progress and a relationship blooming. This is OK. At hospice we always respect the wishes of the patient.
One patient of mine, David, was diagnosed with stage 4 lung cancer, but all he had was an X-ray with spots on it and a couple of blood tests. He refused any follow-up treatment or diagnostic work. He did not want to know more about his disease and its progression, which is OK. The problem was that he showed no outward signs of deterioration, so it was impossible to tell where he was in the disease process. As a result, he was removed from service after six months because he was in the same health as when he started in hospice.
“It’s not contagious, you know. Death is as natural as life. It’s part of the deal we made.”
Dave was fun to talk to because he was open about his life and family. He always told it like it was. He had so many stories about his 80+ years in the world. This patient expressed his pride in his children but also related the disappointments. He spoke of his regret over his estrangement from his daughter. He lamented that there was nothing he could do to reboot their relationship. When I asked him what happened to cause such a huge rift, he shook his head and said, "It seems so petty now when I think about it. Sheryl got pregnant in her senior year of college and immediately married this good-for-nothing guy who knocked her up. The guy was a real loser, drugs, arrests, the whole nine yards of what you never want your kids involved with. Well, she said she loved him and I was so angry at her for throwing her career, her life really, away on this bozo. We just stopped talking. When she asked me for financial assistance a few years later, I said no. And that's the last time I heard from her."
After this stunning revelation, I saw a tear inching down Dave’s cheek. We are both quiet for a few minutes. Dave looked wholly spent. He had no idea where his daughter was located. I suggested a private investigator. He tell me that he already tried that to no avail. We tossed around a few more ideas. I found it strange that his other children, of which there are 2, had no clue where their older sister resided. I wondered if Dave was deliberately sabotaging his efforts to find his daughter.
I didn't learn more about Dave because he was pulled from our hospice service at the 6-month mark. I visited with him 4 times.
“For what is it to die but to stand naked in the wind and to melt into the sun? And when the earth shall claim your limbs, then shall you truly dance.”
I don't continue to see patients removed from our service because I usually have other patients to see, and there are liability and other issues. I've been counseled by the admin staff that it could cause problems for them and me.
I've also had patients turn deeply inward and request we stop volunteer visits. Some patients want to be alone when they are actively dying. One patient, Jim, had a rich inner life due to life-long deep meditation. When he turned inward, I stopped seeing him at the request of his wife. But a couple weeks later, just two days before he died, his wife kindly offered me the opportunity to sit with him again. It was an incredibly kind gesture, and I took her up on the offer and spent a half hour just sitting across from Jim. He was in a light coma, and when his eyes opened, he was looking past me into the distance. It was still lovely to spend that final time with him. I was lucky that his wife, amid her despair, still thought about others' sense of closure. Things like this often happen in hospice. In the midst of dying and the fear and hopelessness that comes with it, there is surprising kindness.
A few people have asked me if it is stressful not to have closure with some patients. I admit it can be disappointing, but never all that upsetting. First, I never leave anything open or unsaid when I end every visit. I treat each visit as if it could be my last. I am careful to thank and praise and say what I am thinking and what I am hoping for the person. Second, I don't view the presence of the patient and the interactions we have to be something that must continue to the patient's death. I consider our interactions as two streams of space—time that blend and flow into and away from each other. Neither I nor the patients, hospice, or the family control that course and direction. We must accept that in the flow of life to death, we have no control. Knowing this, I give of myself and embrace presence every visit. I focus on the patients as if they are angels sent from heaven for the briefest time. I treat my time with them as extremely limited, something that could end anytime.
“I intend to live forever, or die trying.”
And, yes, I learn from and become attached to those patients even if our streams cross only for one visit and they continue on for weeks or months. I wonder about them and their experience. I hope for all of my patients a good death that meets their requirements and vision of their last days in this world. Some people think keeping these people in my thoughts must be exhausting and distressing. I do not experience any discomfort. In fact, the day that I do not wonder about a patient, a dying person I have met, is when I become deeply concerned for my humanity.
This might seem like a dull topic to some. But, really, all this is part of life. And I don't find anything about a person's final days to be less than fascinating, unique, and miraculous. Every hospice patient is different. Every death is different. Even a single visit can make a difference to someone whose life is winding down. More than in any other medical profession, hospice workers learn to see each person and experience of dying as entirely unique. We are invited, if for a brief time, to join a person in their final journey, to help and support them in their experience of dying.
