I knocked the snow off my boots before knocking on the front door of the patient's home. His daughter, Clara, opened it and with a tired smile invited me in. Her father, Harold, was in a hospital bed was right in the middle of the living room, in front of both the fireplace and the big screen TV. I could immediately see that his breathing had changed since my last visit the day before and that he was no longer responsive to our presence in the room.
Clara and I took a seat on the sofa nearby and the tears began to flow as she said, "I had a really bad dream last night. A nightmare." She hesitated and looked at me with doubtful eyes. I encouraged her to continue by asking, "Do you want to tell me about it?" I followed her gaze over at her father's lean form until the quilts, face pale and oxygen tubing snaking around to a noisy compressor in the corner.
I handed her the box of tissue as she continued, in a cramped, pained voice, "I dreamed that he wasn't dying and that we didn't know that and that we got hospice and that he was supposed to get better instead." It all came out in a burst, followed by fresh tears. "What if I have done the wrong thing? What if he was going to get better from this last urinary tract infection and now I'm letting him die?"
I took her hand and said sincerely, "I'm so glad you told me about your dream. You know, it's really important for us to talk about this. Sometimes people don't ask this question but instead try to not think about it, and it can really become difficult later."
Providing a safe place for our patients or their families to express their greatest fears while in hospice can be a gift that we share with those we serve. In modern medicine the decision points are many and the opportunity for regrets later multiply over time. Grief can become complicated, prolonged by the fears surviving loved ones have that maybe, just maybe, they should have, could have, would have done something differently.
I asked Clara some questions aimed at helping her to review her father's downward progression: the initial and progressive memory loss; the series of falls with associated emergency room visits; the loss of mobility and being confined to a wheelchair; the gradual loss of appetite with increasing difficulty in swallowing; and finally the severe urinary tract infection with the hospital stay. During his hospital stay his steep decline continued with extreme confusion, delirium and agitation. When hospice was called, he had stopped eating and was inflicting injuries on his legs as he slung them about in an effort to crawl out of bed. During all this time the daughter dutifully stayed by his side, awake for prolonged periods, trying to keep him from hurting himself. Going home with hospice help became the goal and by the time all the pieces were in place, he was beginning to slip into a coma.
I talked in general terms about dementia and the course that it often takes. Clara expressed some surprise that his constellation of symptoms were almost all related to his brain's deterioration. She said, "I guess I never really understood that the memory loss would then progress to cause all of this. In my dream it seemed like I let him die. It seemed like I could have done something to reverse it." I acknowledged her reaction by telling her, "Sometimes we know that dementia affects the mind but we forget all of the rest of the body is affected, too."
I also asked her if she would like to discuss her questions with the attending hospice physician. She said that she didn't feel like it was necessary now but was glad to have that option.After that, our conversation centered on more information about what to expect from this point forward.
How do we help families through times when they are making difficult decisions on behalf of a loved one? Here are a few points to consider:
Living in the present
Make sure the family understands that they are doing the best they know how with the information they have today. We cannot know what tomorrow holds and in making decisions we are bound by the present. We have to refrain from going back and pointing fingers of accusation at ourselves for not knowing.
Abide by their wishes
If the loved one has a living will, then it's important that we all focus our decision-making on what the patient said they wanted. As I told Clara, "You did what your dad told you he wanted. He did not want any extreme measures to prolong his life."
Plan ahead in care
It's often preferable to offer education and information before it is needed (but not in large doses). In hospice,for example, we like to have the medication we might need available in the home so that we can smoothly address needs as they arise. We also like to honestly answer questions about prognosis when possible and to give families a chance to anticipate declines or changes.
Listen and try to identify areas of doubt as they surface
What can seem like second nature information to us as health care professionals often is completely new to the layperson.
After I examined her dad and confirmed that his breathing had indeed changed in the last several hours, I encouraged Clara to let her son come over and stay with her for the night. I also reviewed the information on how to call us and what would happen after the death.
"Thank you for explaining things to me. It really helps." Her smile now had a look of relief-still tired, but more at peace. I gave her a hug before heading back out into the snow.
