Short on Time
As a Hospice volunteer, it is impossible to form a deep connection with every patient. The primary reason for this is that many patients enter Hospice care very close to their end-of-life transition. Volunteers don't have enough time with these short-lived patients to form enduring bonds or complete much death work. Still, spending even a brief time with these patients is valuable to the patients and their families. For the volunteer, the experience, however brief, can also be rewarding. It is disappointing to receive a death notification just after meeting a patient. Still, there is no need for discouragement. I do a few things that help me with all my patients, especially those with whom I might have only a visit or two.
Today's extraordinary, fast-paced development of treatments for cancer, in particular, means that there is almost always something a doctor can suggest. The hard facts are that, on average, about half of hospice patients die within three weeks of signing up, and about a third only last for a week. This is attributed to the vast number of patients who choose Hospice only after every possible treatment has been tried. (The trend toward shorter hospice stays has its own history and implications. Still, this topic is outside the scope of this article.)
The implication, for volunteers, of more short-lived patients is having one visit and not more than two or three with a patient. This means that there is little time to form a deep connection. This is compounded by late-stage illness in these patients, which usually makes them less attentive and less communicative. Even with a few visits, it is sad to be notified of a patient death. When I started volunteering for Hospice, my first three patients died before I could visit them a second time. This was discouraging. I even began to wonder if it was me, that I was the death bringer volunteer.
Furthermore, I questioned whether I was making any difference. What helped me to realize that I was being of service, even though I could not see it clearly at the time, was the appreciation that the families showed.
"Thank you for sitting with my father. The break helped me to be fully there for him when he passed," texted one patient's daughter.
The daughter of another patient, who I saw only once, thanked me for reading from a favorite book to her mother, "I could tell Mom enjoyed listening to you. Thank you for taking time out of your day to volunteer for us."
These gratitude messages and many others over the years have helped me see that even one visit can be of enormous benefit to the patient and family. If only a tiny bit of solace is gained, it is worth the effort and the time spent. Hospice volunteers and workers must remember that end-of-life care is always about quality, not quantity. The goal is to make every day, however few, count for the people we serve. Time is always short, so every moment matters.
Practicing presence from the start is even more critical when one has a patient who is likely to make their final transition soon. Knowing where a patient is in their death process is always helpful. Usually, the nurse will tell the volunteer coordinator or the volunteer how much time they think the patient has left. Suppose one has not been apprised by a medical professional. In that case, it is possible to tell where a patient is in the process within the first few minutes of interaction. However, it takes time for many volunteers to learn to judge how close a patient is to transition. There are a few things to look for.
When patients are a week or less away from death, they are highly likely to be bedridden or at least spend most of their time lying down or in a comfy chair. They usually have either stopped eating or are eating very little. Their lack of even fundamental physical strength will be readily apparent. Often, they will not be able to speak more than a few words in a whisper. Even the most basic interaction, like greeting someone, will be exhausting. They likely are focused inward.
All that said, every patient is different. Some patients might look like they will die in a couple days and then proceed to hang on for weeks. Some patients look great the first time a volunteer sees them, and then the coordinator calls a couple days later to say that the patient has died. As in life, one must expect, or at least be prepared for, the unexpected. No one can say for sure when a patient will die. Again, this is why it is essential to make every patient interaction count.
In my first meeting with a patient, I assess where I think they are in the dying process. This, along with the other hospice workers and family information, gives me an idea of how much time I may have with the patient. This, more than anything, ensures I won't be caught off guard when I get a message that the patient has died. The other thing I start doing while getting to know the patient if they can talk to me, is to ask questions about their life: children, career, family, geographical origins, … Asking questions about the life history, and listening intently to the answers, gets the patient started on their life review. All my patients who can talk are happy for the chance to tell me about their life.
When I am faced with a patient who cannot communicate and is close to or in the final transition, I assume they can hear me. I ask the family what kind of music the patient enjoys, about their reading habits, interests, and anything else they can tell me that can inform what I talk about while I am with the patient. This way, I have an arsenal of activities to engage in with my patient.
For instance, one patient's spouse told me, "Lenny really loved baseball. He could pour over those stat charts for hours and knew everything about the careers of so many players." This was great to know, and I spent much of my time with Lenny reading him the baseball news and the latest stats off my phone.
Because I assume the patient can hear me no matter what their condition, I introduce myself and behave as I do with others. For example, I do not talk about them to others in their presence. I don't ever act as if the patient is not there. Finally, when I am with them, I employ touch. I pat their hand when I introduce myself, and while I am there, I try to let them feel my physical presence.
By treating the non-communicative patients like I treat others, I maintain their dignity and affirm their continued place in the world. Again, I base what I do with the patient on the information their loved ones tell me. I've had comatose patients who liked quiet and music, so I spent most of my time playing music they loved and just holding their hands.
My awareness of the tenuous hold all my patients have on life makes every goodbye important. Every time I leave a patient at the end of a visit, I make sure they know that I have enjoyed our time together and thank them for their contribution to my life and learning. I also tell them I plan to visit the following week. If they can communicate (if not, I do it with the family), we set up an appointment. This provides us with closure after each visit, but it also sets up the next meeting and gives us something to look forward to. This sounds simple, but it is pretty easy to say, "let's play it by ear" or "let me know a couple days before." It is almost as if we all fear failed arraingments, so we are resistant to plan in these cases. Both social contracts, the goodbye and thank you, and the setting of a subsequent meeting are necessary for these tenuous situations. It covers all eventualities and acknowledges that none of us knows what will happen.
I value and love all my patients. And I have come to value my short-lived patients for what they teach me about impermanence. I appreciate them reminding me that every single patient and moment counts; for helping me to stay focused on patients in every circumstance. It might seem that one visit is not enough. But since every second counts, a couple hours is plenty of time to make a difference. My experience with short-lived patients gives me the urgency needed for a patient focus from the start of each assignment.
