Chapter 11

Over the following years, the referrals to CPCN continued.  Of the patients, 70% were diagnosed with cancer.  These patients went through the active medical system.  After diagnosis, they were treated, often with excellent results.  Upon relapse, they were given new treatments and when there was no possibility of further treatment, they were referred to the palliative care teams in the acute care hospitals for symptom control and discussions related to near-end-of-life issues.

When hospital palliative care physician referred patients to my community practice, they often contacted me and explained the patient’s medical history, the complexities of symptom control, and the family dynamics.  I assumed the patients understood they had a life-threatening disease and had agreed to a palliative approach to symptom control at home.  I learned that for my care to be effective, I needed to build trust by verifying exactly the patients and families understanding about their illness and their goals.

Patients Refusing Discussion of Impending Death

When I first started my CPCN practice, I stated categorically “I cannot care for patients at home who refuse to discuss the reality they are dying.” As patients grow weaker and weaker, the option of explaining they are dying and asking for informed consent on any treatment becomes impossible. The patient’s usual interpretation of increasing weakness and loss of appetite becomes, “It must be the medication. I should stop the medications and try something else. Maybe if I exercised more or ate more, I would be better” or “I should transfer to the hospital for tests so they can correct the problem.”

I came to realize that, at times, there was a much more complicated explanation behind the denial of their reality. If I did not understand the complexity surrounding their fear of dying, and still forced a discussion of the issue, I could easily provoke misunderstanding and destroy my ability to positively contribute to a difficult situation.

Ina’s Journey

I also learned from one very poignant experience with a patient and her family, how it was possible to make errors in judgment early, but with understanding, perseverance and patience I could correct my mistakes to achieve positive outcomes.

Ina had immigrated from Africa, a single mother with three young children.  She lived in assisted housing with a community of similar backgrounds.  Her brother lived nearby.

I knew from previous experiences with patients of Ina’s culture and Muslim religion, that I needed to tread very carefully in my conversations about death, but in the urgency of this situation, I forgot to be cautious.

I received the urgent referral, urging me to visit the same day. Ina had been diagnosed with extensive cancer now spread to her liver. She was severely jaundiced, had pain in her abdomen, and vomited frequently.  She was obviously in liver failure.  Her present crisis was life-threatening.  When I arrived, the nurse and interpreter were in the home.  Ina had no one to care for her children when she died.  The social worker had planned to visit Ina to set up a meeting with her brother to start the adoption process for her three children. The nurse felt Ina would not be able to stay at home, but at the very least, she needed urgent symptom control. In the apparent urgency and complexity of the situation, through the interpreter, I explained to Ina that her condition was serious, she was close to dying, and she should go to the hospital if she wanted further treatment

Ina clearly stated, through the interpreter, that she wanted to stay at home with her children until the legal adoption was finalized. In reflecting on the conversation a few days later, I realized that Ina was very calm and not concerned about treatment. She was focused on her children.

I prescribed a simple medication regime to control her symptoms. I requested shift nursing  during the day, five days a week, to help Ina with her day-to-day activities, medication administration and personal care.  I scheduled a visit in two days to reassess her symptoms.

I felt we had done the best we could. I was wrong! I soon realized I had acted too quickly during my first visit before having all the information. There had been good reasons to do so, but at least, I should have expected there may have been some backlash.

The next day the home care case manager reported that Ina was feeling better, a nurse had already started her shifts in the home. But Ina’s brother was furious that we had talked about ‘dying’ with his sister and asked that I be withdrawn from her ongoing care. The case manager and social worker set up a meeting with her brother, without Ina’s presence, and asked me to be present. I agreed, knowing that if we did not find a way to appease Ina’s brother, whom I recognized was just trying hard to advocate for his sister, I would not be allowed to continue caring for her. I also knew there were no other community physicians available to take over the care urgently, so without my help, if Ina had a crisis, she would be transferred to the hospital.

During the meeting, I allowed her brother to talk and let out all his frustrations. He clearly stated that he believed a doctor should never speak to their patients about death. Such conversations would only make patients very fearful and take away their hope.  I listened very carefully, but my mind was racing, wondering, “What could I do to be allowed to continue caring for Ina? I could NOT take his approach; I had to stay within my boundaries of care. How could I find a compromise?”  On the positive side, her brother admitted that Ina was feeling better with the minor changes we had made.  He agreed to continue with the shift nursing if the nurse did not talk about death.  I knew Ina’s nurse well.  She was very experienced and would be an essential resource to help Ina stay at home.  As well, I knew Ina would likely not need, nor accept, further changes in her medications.  Therefore, I did not offer any new changes avoiding any friction in that area of care.  I had a little hope, that we could help Ina if her brother allowed me.

I explained to her brother that I wished to remain part of the care team, regularly visiting on Tuesdays and Fridays. I promised I would not bring up dying. I would simply assess Ina ensuring we were doing the best for her. However, I also stated that if his sister asked me about dying, I would answer her questions simply, but I would not lie to her.  He was hesitant but agreed to the plan, stating he would monitor her closely and fire me if I did not follow through on this plan. He also approved that the social worker could start the adoption process for his sister’s children.

My next step was to visit precisely as I promised, have patience, assess but say little, and allow the significant part of the care to be delivered by the shift nurse. I hoped the social worker could quickly work through the adoption process.  I expected Ina to live just a few weeks. But I underestimated the love of a mother.  Ina was very protective of her children, and if only by sheer willpower, she would not die before her children were settled.  With just the simple medication regime we set up for her, with low fat and low protein meals requiring little need for her liver to help with digestion, and with the very supportive daily care of the nurse, she thrived. Her jaundice subsided a little and her pain was much better with little vomiting. She remained stable for over two months.  I continued the visits twice a week and gently assessed her status with the nurse’s input.

During these two months, Ina was amazingly well except for Sunday evenings and Monday mornings when she presented with severe nausea and vomiting. The shift nurse and I slowly and gently asked a few questions about her weekends.  Ina and her children spent most of her weekends with friends to help care for her children.  Socially she had to eat the food they placed before her – usually high fat and high protein foods that ‘triggered’ her abdominal pain and vomiting.  Her symptoms cleared when she returned to her low fat, low protein diet.  I knew Ina would NOT change her routine.

A few days of pain and vomiting were acceptable to her if her children were safe.  My role was to explain the events to the nurses, advocate for Ina, and continue the same regime, despite requests from nurses to increase her medications.  After a few months, we noticed the premonition signs were beginning to progress.  Ina was more tired and less hungry.  I wanted to make changes, but to be able to participate in Ina’s care, I had to continue my assessment and advocacy role patiently.  Any action I took would have required talking to Ina about her impending death. I had promised not to do that.  Her friends and her brother also observed the changes. They blamed the medications and persuaded her to stop taking some of them.  Her fatigue progressed but not her nausea because she ate so much less. The visiting nurses saw she was weaker and now having more pain and asked me to give her more potent medications.  I refused to do so knowing that when the shift nurse was present, she would be offered her usual medication if she was distressed.  My only option was to continue to assess her with the shift nurse to ensure she was not destabilizing.

The Beginning of Destabilization

A few weeks later, Ina’s eleven-year-old daughter called me during the night. She was crying, afraid, stating her mother was not well and blood was everywhere. I visited quickly.  Ina had awakened, felt nauseous, and was too weak to get up to the commode. She had vomited a large amount of blood, now felt better, but she was too weak to clean up her bedding and change clothes. Her vital signs were within the normal range. She agreed to an injection of Gravol. As the medication took effect, I did her personal care and settled her back in bed.  I knew the shift nurse would arrive within a few hours, well before the effect of the Gravol wore off. Before I visited in the morning, I called the nursing coordinator of the residential hospice, explained the situation, and asked for an urgent admission. There was a bed available.

On my return, Ina was much more comfortable, alert, in no pain, and able to eat a little fruit. We discussed what happened in the night and how frightening it had been for her daughter to see all the blood. Without explaining that she was dying, I asked her if, to ease her children’s anxieties, now might be the time to transfer to a care facility to control her symptoms better.  She looked at me with very calm and wise eyes and said, “Doctor, I know that I am dying. But Allah will help, and you will come. I will stay here with my children.” I left, feeling afraid for her. It was great that she trusted me to be there, but would I be there for her the next time this happened with my busy practice?

All remained calm for the next week except for increasing fatigue.  The adoption process for her children was now complete.  We set up a visit with her brother, the social worker, the nurse, and me to decide logistical arrangements.

Her daughter called me again the night before the scheduled meeting to state her mother was too weak to get out of bed. I hurried to visit, arriving just before sunrise. As I turned the corner to her home, I saw a fire truck, a police car, and an ambulance in front of the house. I knew someone had called 911. (When 911 is called, the paramedics have authority over the patient’s care, not the family physician, especially when there is no DNR signed.)  I knew the chance of Ina being able to stay at home now was almost zero. Still, I heard her words. “Allah will help; you will come.” I had to try to keep Ina at home.

First, I explained to the firefighters and police outside Ina’s home that I was her palliative care physician. They felt relieved of responsibility and left the scene.

Second, I entered the room and took a moment of reflection to quietly observe the scene, Ina’s condition, and the approach of the paramedics.  Ina was lying down and appeared comfortable, but barely responding.  The paramedics had treated for low blood sugar but were discussing with each other that her condition had not improved. I approached the senior paramedic, explaining that I was Ina’s palliative care physician, but I knew he was in charge. I explained that I had visited urgently the week before due to massive gastrointestinal bleeding, and Ina had requested to stay home until she died. I stated that I would stay with Ina until her shift nurse, social worker and her brother arrived in the next hour if he handed over the responsibility of care back to me.  Then I went back to the chair in the corner and observed.  After a few minutes, the senior paramedic said, “OK, we will leave, but she is now your responsibility.” I turned my attention back to Ina. To ensure she was comfortable, I administered Gravol and repositioned her comfortably in her bed.  A few minutes later, when I was alone with Ina, I observed her breathing had changed to a much slower pattern with less effort.  I stayed beside her and held her hand as she quietly ceased to breathe over the next few minutes.

Her brother arrived minutes later.  Her children were awakened. They saw their mother lying peacefully in her bed, then they just melted into Ina’s array of friends who would support and protect them, until her brother took them to his home.  That had been Ina’s wish – to stay at home, to have her friends help with her children when she died, and to ensure her brother was their father.  Now, she no longer had to worry about them.

Within the next hour, the nurse and social worker arrived, and we set up the arrangements for Ina’s transfer to the funeral home and the living arrangements for her children.

Ina, and many of my patients, taught me so much about communication. I realized the approach I was using as I started this practice (i.e., How to Provide Family Medical Care in the Home adapted from the WHO) was definitely the ideal approach.