The room was absolutely peaceful. The woman was probably in her forties, with some early gray hair. She sat silently by her mother’s lifeless form. She spoke quietly, of good times.
“I’m just not ready to let go of her,” she said without looking away.
We never are. There seems to be no opportune time for anyone else to die. She was having great difficulty notifying her siblings, all scattered in many states, and busy with their lives. Yet, she was not angry, nor bitter. Her way of accepting this loss spoke of her relationship with her mother, and of the way they had dealt with everything else to this point. She began telling stories of float trips, and other outdoor activities that brought them much joy. This is how it is supposed to be. How will you finish? Without being morbid, can we prepare others for our departure by recognizing that it is inevitable? Perhaps there was little left incomplete between them, making this great difference in how her daughter handled her death.
From her: I heard that there is much to be thankful for in our unique relationship to our loved ones. It doesn’t matter how others do it. It only matters how we do it.
I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.
She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.
The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!
A journal article I read prompted some very strong feelings surrounding End of Life Sexuality/Intimacy for me as both a consumer of healthcare and provider. As a former Hospice and Palliative Care Social Worker I am recalling my initial assessments along with the more routine discussions I would have with patients and their significant others. We would discuss all things from finances to activities of daily living; however never did we approach intimacy in great detail.
The more I read the article and began to think of my own thoughts on intimacy I decided how important this topic is to incorporate in our daily practice. The questions that came to mind and were validated as I read the article were: Would I be scared to touch my loved one in an intimate way? Would it help to have permission from the healthcare team to explain what is okay? Not okay? Would they judge my loved one and I shut the door and locked it so we could be intimate? Would someone help me find other ways to be intimate if I could not do the things we were used to? It dawned on me that I had not been as supportive as I thought I was to my clients in the past. These were tough thoughts and truly even more than I wanted to disclose on this post but I felt very necessary to share. Before you consider your client’s thoughts on this topic—please take a moment to think of your intimate needs from direct touch to sexual desires. How much of this would change if you suffered from a terminal illness? How much of these needs would you still desire if you had a terminal illness?
Can we as providers push ourselves beyond our comfort level to see that ALL end of life needs are met? The American Journal of Hospice & Palliative Care article provides an excellent start perspective on the topic for providers and can serve as an education tool on enhancing all aspects of end of life care. We work very diligent to provide the best care to our patients and their families and we build some of the strongest rapports in healthcare. This should be maximized by helping clients address their most intimate needs including intimacy itself. I encourage you to read the article and decide how you may enhance your practice, whether at bedside or in the home of those clients that are facing end of life.