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As our conversation progressed, I came to appreciate that discussion around fear and death can evolve to thoughts centered around healing and living life well within the Palliative Care Unit.
As part of the emotional and spiritual healing process, patients have various fears that need to be addressed. Common ones include a fear of pain or fear of not being able to breathe well as the physical illness progresses. Dr. Sauls deals with this kind of fear by reassuring the patient that they can help manage pain or breathing symptoms through medication or other approaches.
Palliative patients' needs and fears are not just medical, however. They also fear dying without dignity. A sense of indignity may result from having little privacy or from the loss of independence that may result as an illness progresses. Staff try to preserve the patient's dignity "by first learning what dignity means to each person," according to Dr. Sauls. "We protect dignity by responding to patients as individuals with unique values, goals and preferences."
The sick and suffering may develop a sense of isolation from the rest of the community. Some patients develop a fear of abandonment and do not want to be left alone. This particular fear can be very draining on the family if they are expected to be with the patient constantly. "By creating an environment that supports and encourages continuing relationships, the Palliative Care Unit tries to alleviate some of this distress," says Dr. Sauls. It helps that the CVH Palliative Care Unit is a small one, allowing the patients to get to know the staff very well and vice-versa. The staff may become an extended and trusted family or community. Patients have been known to connect even with housekeeping personnel.
Sometimes fears are addressed not so much by what Dr. Sauls says, but by what he does. When a patient is in distress Dr. Sauls simply stops and listens. He may not be able to do much in that instant, but he has not abandoned them in their moment of suffering. And sometimes it's enough to just acknowledge and talk about a problem or fear, without finding a particular solution. He believes a large part of understanding the needs of patients comes from getting to know them first. "One of the biggest mistakes a physician can make is to just start talking....Your first step is to listen when you walk into a room." From listening comes the collaborative ability to map out a pathway for the patient's illness.
At times the best approach is to walk two pathways simultaneously-letting patients continue treatment, but also preparing for things if the treatment doesn't work. If earlier in the treatment phase the patient and family deal with the possibility of death, then fears can be lessened and opportunities can be gained for better living. If acknowledgement comes too late in the patient's declining health, it may not allow enough time to work through issues that are important to the patient.
Patients may express that they fear death. Dr. Sauls realizes that this fear can have different facets and he attempts to learn what the patient is trying to articulate. It can mean that the patient is sad because he will be leaving his family, or it can mean that he is afraid for his family, wondering how they will cope after his death, especially when young children are involved. Patients who are not used to acknowledging or expressing their feelings have difficulty explaining or understanding their fears. These patients may end up being very anxious. To deal with their fears they may need an alternative to language, such as relaxation or music therapy.
With no hope for a cure, some patients have no hope-they fear their lives no longer have value. Dr. Sauls tries to reframe this belief. Since the patient's life is going to be shorter, there is the need to focus on what remains of value to the patient and make a plan for the rest of his life. Dr. Sauls poses the question to his patients, "What can you do to continue living as best as you can with whatever time you've got left?" It can be something as simple as enriching relationships. Or it may mean cutting back on medical tests and intervention and arranging activities outside of the hospital.
With dying comes the review of a patient's life, which may cause existential distress. Patients may wonder whether their life has had meaning and whether they have fulfilled their life goals. What was accomplished? What are things that have been left undone? What legacy is being left behind? As Dr. Sauls reflects, "In the end, we all need to know that our life has had some meaning. The ways in which these questions are explored and answered are as diverse as the individuals being cared for. Sometimes the most natural starting point is to create a space for patients to tell the stories of their lives. This may occur in bits and pieces informally, or it may occur in more deliberate conversations. The hope is that the meaning will be discovered where it most often lies - within the fabric of the patient's life."
Dr. Sauls' role in the palliative care unit is ultimately a collaborative one. While it is his responsibility as Medical Director to ensure that the palliative program meets the highest standards possible through vision and leadership, he is quick to point out that those high standards are only met through team effort. Staff members have their own ideas and expertise on how and when to meet the needs of each patient. But it all starts with listening.
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