Recently at our Hospice CareCenter at Northwest Community Hospital we cared for a patient, Robert*, who was formerly at a nursing home. He was without family. The only friend we knew about, who was responsible for his power of attorney, lived some distance away. Because Robert was minimally responsive and had not had any visitors, we did not know much about him. This is always a little difficult because we want to understand the patient as a person, to put a "story" together of a life. One of the only details we knew about Robert was that he was a veteran of World War II.
Soon after I started working full time in hospice care as a chaplain, I made an initial visit to a patient and her daughter. Little did I know that after 144 visits, four Christmas celebrations, four birthday parties and countless other “just because” fiestas, I would pray the final words of commendation at her graveside with tears in my eyes. As a chaplain I don’t have favorite patients, but there are those that attach to the heart in special ways... especially after five years of visits, laughs, cups of tea and tears.
When I began home hospice with JourneyCare a year ago, I did not expect I had much time left due to my end-stage COPD. One of my top concerns was my pitbull, Coal. I rescued her from a shelter as a six-month-old puppy, and she has been my constant companion for the last eight years. I hated the idea of having to give her up due to my illness, so I hired a dog walker. (Luckily the dog walker fell in love with Coal and agreed to adopt her when I am no longer here.)
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.
Music therapists use a range of musical techniques to help hospice patients relax, express feelings and recall significant experiences from their lives. Using both instruments and voice, music therapists encourage pateints to sing along with them or will help patients write songs to leave as a legacy for the people they love.
I don’t think I will ever forget one of my first experiences working as a full-time music therapist in hospice. Fresh out of an internship and living in a new city I realized I had some growing to do. I can remember my first couple of visits with one gentleman in particular. At the time, I was referred to help him with anxiety and processing of his illness. Strong, independent, and very open about what he wanted and didn’t, he was of course a little hesitant of the young woman walking in with a guitar ready to sing — wanting to know exactly how I could help him.
Drawing on their musical and clinical palliative care training, music-thanatologists use harp and voice to address physical, emotional and spiritual suffering at the end of life. Using music prescriptively, they vary the tempo and tone of music to respond to changes occurring in a patient's body, like a slowing of pulse and breathing, in the final hours of life. During their visits — music vigils — they alternate sound and silence to help patients and loved ones relax and rest.
Rebecca is actively dying. Her breaths have become agonal, and her skin is gray. Her cousin and I arrive at the same time, and together we sit by her side, offering her comfort.
Massage therapy has proven to be very beneficial for hospice patients and can lessen the need for pharmaceutical intervention. Massage therapy can provide immediate relief of pain, discomfort and anxiety caused by symptoms such as contractions, stiffness, shortness of breath, nausea, cramping and muscle spasms while simultaneously increasing feelings of peace and comfort. The simple act of human touch is one of the most ancient and effective ways to relieve discomfort in the body. Providing massage to the dying reinforces the wholeness of the individual regardless of what is happening to their body.
As a massage therapist for hospice patients, I went to see a woman with cancer. She was a published poet, very creative and very insightful, and the more I got to know her the more remarkable I felt she was.
By engaging the creative process of art-making, patients of all ages can enhance their physical, mental, emotional and spiritual well-being. Self-expression through art can help resolve conflicts and problems, reduce stress, increase self-esteem and self-awareness and achieve insight. For hospice patients, art therapy can aid symptom management, provide a way to communicate about their illness and facilitate exploration of spiritual concerns. No artistic skills are needed to benefit from art therapy.
An older adult woman was referred to me for art therapy sessions to help elevate her mood. She was mourning the loss of her physical abilities after a stroke. Her life prior to her stroke included teaching Latin and always having her hands busy with knitting needles.
I am nine years old, standing wide-eyed, frozen in the darkened hallway by the closed door to my parent’s bedroom. My mother is inside, gasping the words to the 23rd Psalm. Something is terribly wrong. Terribly wrong. I don’t know what it is, and I don’t ask. She’s been sick for more than a year, spending more time in bed as the months pass and recently, oxygen tanks were hauled up to her bedside.
You are dying.
I have reviewed the Cat Scans, spoken to the specialists, and studied the labs. There are many possible treatments that could be offered, but I fear they will not stem the course of all that is happening already. The tumor is too advanced, the metastases, too malignant.
I know there are many questions about chemotherapy, radiation, and feeding tubes. I would caution you to think of death as the inevitable endpoint. There are many things we can do between now and that endpoint. Some will increase your life expectancy, and some will cause pain and discomfort. The trick is to decide what is more important to you: quantity vs quality.