At times, I felt that it might not be possible for some of my patients to achieve their goal of living at home until their death. As I tried to think of the best alternate place of care for each patient, many of my patients took matters into the own hands, teaching me some unique solutions to prove that they could remain at home until their deaths. Not all succeeded with their strategies, but many more than I expected.
Jeanne was 80 years old and lived alone. She was comfortable yet progressing quickly toward death. Jeanne could no longer transfer out of bed nor perform her essential activities of daily living independently. I set up a family meeting with her and her eight children. She told her children she wanted to stay at home until she died.
I asked her family how they felt about caring for their mother at her home. Of the eight adult children, six stated categorically that they could not take responsibility for the care. It would be too difficult. The two youngest children immediately stepped up and stated clearly, “We will provide the care for our mother.” Her son had cerebral palsy. He could ambulate with a limp but had moderate weakness in his left leg and arm. His sister suffered a stroke a few years earlier. She recovered but continued to have significant right leg and arm weakness. Both had been cared for by their mother during their most difficult times.
I observed their physical limitations. I knew their mother needed mainly personal care and repositioning in the bed. I asked them, “How will you provide the physical care for your mother?” They both smiled and said, “Just look at us – and you will see.” The daughter went to the right side of the bed, the son to the left side. Together they lifted and repositioned their mother with ease – both had great strength in the ‘good’ side of their body. Working together, they were powerful indeed! The home care case managers added nursing and personal caregivers from the community resources for Jeanne’s primary personal care. Jeanne agreed to a catheter inserted into her bladder to prevent urinary incontinence and the need to transfer out of bed. She was eating very little so the support workers could handle her bowels easily with disposable diapers changed in bed. When she needed injectable medications, nurses visited to set up the medications and taught her two children the administration technique. They succeeded very well. Their mother died quietly in her home with family close by a few weeks later.
Douglas lived alone. He was referred to my care after chemotherapy failed to control his aggressive sarcoma. This sarcoma impinged on his spinal cord, causing weakness in his legs. He also had visible spread of numerous mushroom-like lesions attached to his scalp by a narrow stem. Although he had a large family, there were severe relationship problems. One of his daughters did visit every few days and shopped for groceries and essential items. That was the best she could do.
We had discussions during each visit about his ability to stay at home alone. My main question to him was, “How would you transfer out of bed to the bathroom when your legs weaken further?” Douglas was adamant that he could stay at home because he had already found a solution to his bathroom dilemma. He managed all his essential bladder and bowel functions by simply using large plastic bottles for his urine and double plastic bags for his stool. He asked if I could visit him twice weekly to assess his condition.
A week later, I was called urgently by the visiting nurse. She sounded distraught stating that she was with Douglas who was frightened because one of his large scalp lesions was bleeding profusely. She did not have the dressing supplies to stop the bleeding and asked for an urgent visit. Fortunately, I was close by and able to visit within minutes with the necessary bandages. Indeed, there was blood everywhere pulsating out from the largest scalp lesion, the size of a lemon. Douglas was so frightened of the bleeding that he was now agreeing to a transfer to the hospital.
In a way I was relieved that, with a transfer to the hospital, he would be in a safe place with the care he needed. Before the transfer, I quickly controlled the bleeding by finding the site of bleeding and compressing the tissue around the area tightly against the skull with bandages. I knew it would be a temporary solution, but it would give us time to call 911 and transfer him safely to the emergency room for a more permanent solution. I wrote a detailed history of his illness explaining how we had controlled the bleeding for the emergency physicians. I believed that he would not return home.
Three days later, I received a call from Douglas. He sounded happy and called mainly to ask why I had not visited today at his home as I usually did. My first response was to ask, “Where are you?” He answered, “At my home, of course! I am doing well. The doctors at the hospital said that you would change my dressing in three days. Today is the day.”
I was really surprised that Douglas was back at his home! I visited later in the day, and we talked about his experience in the emergency room. He stated there had been no bleeding from his wound when assessed at the hospital and his vital signs were within the normal range. The physicians read my note. Since the dressing effectively controlled the bleeding, they decided not to remove it to examine the tumour. And, of course, with the bleeding stopped, Douglas was no longer frightened and expressed his explicit wish to the physicians to go back home. I looked at Douglas – he was so happy to be home. And now, he trusted me completely. He believed I could control all his symptoms and he would never need to go back to the hospital.
However, I knew that my approach to the bleeding was only temporary. I needed to devise a better plan. The next day, I timed my visit with his nurse, and brought with a long, thin gauze dressing and plenty of stretchable dressing material. When we removed the dressing, there was no sudden onset of bleeding. I wrapped the thin strip of gauze around the stem and pulled it as tightly as possible to compress the blood vessels feeding the tumour. We then dressed the tumour compressing it tightly to his scalp as before. We repeated the process every three days until it was apparent the tumour was bloodless and dying. I then cut through the stem, removing the tumour head, and used a stick of silver nitrate to burn the blood vessels at the tip of the stem. We carefully rewrapped the cut area securely against his scalp. Within another week, there was no need for any dressings. Douglas died in his home and, somehow, he managed to have his family at his bedside!
Both journeys demonstrated a fierce desire to live – and die – based on fulfilling their goals. I was humbled by the determination and willingness to find their own ‘elegant’ solutions.
