KARL'S LIFE WAS not easy or comfortable.* He was a 65-year-old Vietnam War veteran in hospice for end-stage hepatocellular carcinoma secondary to hepatitis C virus infection. He lived in an apartment with his girlfriend, Betty, and both were in recovery from substance use disorder. As his hospice nurse case manager, my responsibility was to oversee his care, facilitate symptom management, help him get medications and medical supplies, and coordinate the hospice team to make sure he was comfortable during the last stage of his illness.
Along with myself, Karl's home hospice team consisted of a chaplain, a social worker, a hospice physician (Dr. Lucy), and a clinical manager. Dr. Thomas, the primary care physician who had referred Karl to hospice, was also very involved in his care, continuing to see Karl regularly in the office and checking in with phone calls to provide support. Team members spoke with Dr. Thomas frequently, sharing updates, successes, and challenges.
The team was well-qualified to care for Karl. Dr. Lucy had a background in caring for patients with substance use disorder and was very familiar with Karl's challenges. The social worker accompanied me each time I visited Karl for consistent support. Karl's methadone clinic nurse was also an essential team member whom I would call with updates, especially when we encountered challenges managing his pain. Karl was lucky to have this committed team of people who were so knowledgeable and experienced.
Karl had been dishonorably discharged from the military for selling heroin while stationed abroad. As a result, he was not entitled to medical care and psychiatric support from the US government. He would later live on the streets, at an inpatient rehab facility, in shelters, and at a rooming house before moving in with Betty.
By the time we met, Karl was in recovery from his substance use disorder. He had married and divorced, and had fathered two sons who were now grown but estranged from their father.
As Karl's illness progressed, Betty withdrew. She did not want to care for him, saying his illness brought up unsettling memories of her parents' illnesses and deaths. She was committed to sobriety and had learned to avoid stressful situations that could cause her to seek refuge in drugs or alcohol.
Karl's substance use disorder was treated with methadone, dispensed by a nearby methadone clinic that was staffed with nurses and overseen by physicians who specialized in treating people with opioid use disorder. They provided support as well as supervision. Karl was required to be at the clinic every day before 0800 to get his methadone. Because he had missed appointments in the past, he was not eligible for “takeaway” doses to self-administer at home.
Pain management can be challenging for people like Karl with severe cancer pain and a history of substance misuse. Initially, Karl took only aspirin for pain because his doctors feared that giving him anything stronger, such as morphine or other opioids, could trigger relapse and possibly lead to an overdose.
As Karl's cancer progressed, he grew weaker. His living conditions added to his challenges. His apartment was accessible only by climbing three steep flights of stairs. He needed to go to the methadone clinic every day and relied on walking and public transportation for basic needs such as groceries. His health insurance would not cover a stay at a long-term-care facility, and he refused to consider moving or accepting outside assistance such as homemaking help.
Hospice teamwork approach to control pain
Optimally managing Karl's pain was a priority for the team. To treat Karl's pain safely, only small amounts of pain medication were prescribed and I visited at least three times a week. Dr. Lucy managed his regimen of long-acting pain medication (MS Contin) and short-acting pain medication (MS immediate release), which he would take for breakthrough pain. She titrated these to optimize pain relief, increasing doses as his disease and his pain level progressed. I counted pills each visit to help hold him accountable as well as to help Dr. Lucy know how much pain medication he required to keep his pain at a level that was acceptable to him. We worked with the methadone clinic staff to taper off his methadone so that he did not need to make that trip every day and explored ways for him to get groceries without taking the bus to the store every few days. This required a period of a few weeks in which Dr. Lucy used opiate equivalent calculations to gradually replace the methadone with long-acting morphine. It was important that Karl did not have increased levels of pain due to the methadone taper.
Teamwork, routine, and empowerment
Gradually, as Karl stopped going to the methadone clinic and separated from Betty, his world narrowed to his hospice team and Dr. Thomas, who remained in close contact with Karl. We responded as a team, increasing our visits and telephone check-ins, calling on the days we didn't visit. Our social worker planned for the day when Karl would no longer be able to live in Betty's apartment, looking for long-term-care facilities that Karl could afford with his limited resources. However, Karl continued to refuse to change his living situation. He said he would let us know when he was ready to “go inpatient,” explaining that he knew what it was like to need to live in a facility, having done so while in acute inpatient substance use disorder treatment. The hospice team continued communicating closely with each other, providing support and strategizing the best ways to help Karl.
Our team provided a routine by visiting him at the same time each day at the time that he requested, which empowered him at a time of life in which he had less control than ever.
Supporting each other
Staff support for one another is crucial in hospice care. Karl's safety was a constant worry, one that was hard to “leave at the office.” Our greatest fear was finding Karl in his apartment, alone and completely uncared for. The team developed “worst-case-scenario” plans, knowing that our agency has an inpatient hospice facility to which he could go if he agreed.
The multidisciplinary team approach brings many perspectives to a situation, which is better for problem-solving. Everyone on Karl's team appreciated the others for support in a challenging situation.
In the end, Karl had a pain crisis and agreed to go to the local hospital where Dr. Thomas worked. We arranged for ambulance transport to the hospital. Shortly thereafter, he was transferred from the hospital to our agency's inpatient hospice facility for focused pain management and holistic care. He died there a few days later.
Our fears that Karl would die alone and uncared for were put to rest. He died free from pain and anxiety, cared for by an expert hospice staff. His estranged sons and ex-wife came to sit with him as he died. Karl's life had not been easy, but he died a peaceful, comfortable death.
In getting to know Karl, the hospice team was able to see beyond his history of drug abuse. Karl was very appreciative of others, open and nonjudgmental, and was highly motivated to maintain his sobriety. Dr. Thomas, the staff at the rehab facility, and the practitioners at the methadone clinic saved his life every day. They made the peaceful end to his life possible.
Please do your best to help people like Karl. They are everywhere—in our cities and towns, in our neighborhoods, and in our families. Their lack of support might make them wonder what will happen to them when they can no longer care for themselves. Donate clothing, furniture, or time if you are able. Smile at people and offer to help. Ask a question and give a kind, encouraging word. And know that every little act of kindness helps.
* All names have been changed to protect privacy.