Chapter 33

Pre-referral Information:

I first met Claude while providing palliative care for his wife at their home nine years before he was referred to me.  Even at that time, he had severe ischemic cardiomyopathy, suffering a heart attack a year after his wife was diagnosed with cancer.  The cardiac dysfunction was linked to his exposure to Agent Orange when he worked for the Canadian government in Northern Ontario. His cardiomyopathy was so severe that he was considered for a heart transplant while his wife was undergoing chemotherapy.  Unfortunately, he did not qualify due to chronic lymphocytic leukemia also linked to his exposure to Agent Orange. When he was the principal caregiver for his wife at home, he suffered a minor heart attack requiring hospitalization for a few days.  As soon as he returned home, he continued to care for his wife as if nothing had happened to him.

Initial Contact:

Claude contacted me to ask if I would provide him with community palliative care at his apartment. His cardiac condition had deteriorated with several hospitalizations for severe acute cardiac events requiring a pacemaker and defibrillator insertion. He indicated he did not wish to be resuscitated during his last hospitalization. At that point, his cardiologist explained there was nothing more they could do for him in the hospital.

They asked him if he wished to be discharged home on a regime of intravenous Milrinone, an experimental cardiac drug delivered continuously via a pump connected to a central intravenous line. His physicians were very clear that this was their last effort to stabilize his heart. He was told he would need a physician to visit him at his home to monitor the Milrinone pump, reorder the medication when required, and assess and control any new symptoms. They felt his prognosis was a few weeks to a few months. Claude very much wanted to stay at home until his death. He had been told many times that his death was imminent. He had come to terms with his impending death and just wanted to continue to live as normally as possible in his home until death overcame him.

I remembered Claude and his wife. I knew how well he had cared for his wife, disregarding the stresses the care had placed on his health. I knew he was very realistic and practical. The DNR was signed. He would not return to the hospital for any complication – except perhaps a fractured hip. If anyone could stay alone in an apartment, independent until his death with such a compromised heart subject to an acute crisis at any moment, it would be Claude. I quickly agreed to be part of his team.

Fusion of the Science with the Art of Near-End-Of-Care:

Claude had a daughter who lived in town and was very supportive visiting often with her two children. He loved them dearly and wanted to be around, to enjoy their company.  He lived in a tiny one-room apartment close to a retirement home. He was fully independent. He used Meals on Wheels for his main meal but was strong enough to do his grocery shopping and prepare his other small meals himself. He used a scooter for mobility when the weather was good and a taxi if it was not. He loved his short trips on his scooter around the neighbourhood.

Claude had a team of physicians supporting him through his years of illness. He knew them well, trusted them, and wished to maintain their link. Claude had a role for each.  His cardiologist agreed to continue to monitor him via a visit to his office about twice a year. He continued to prescribe his essential cardiac medications. His family physician was a good friend, but he was out of the country frequently and could not provide home visits consistently. Claude had him monitor his blood thinner dose. His hematologist continued to monitor his chronic leukemia via weekly blood work.  Claude visited him a few times a year because he enjoyed the interaction, knowing that there was no active treatment apart from an occasional blood transfusion.  Claude assigned me the central role of his care. He expected a phone call about every two weeks and would let me know if he needed a visit. I managed his Milrinone pump and helped optimize his diuretics. We monitored his weight, the swelling of his legs, his blood pressure, and reviewed his blood work regularly, changing his dose of diuretics accordingly.

The home care visit nurses managed the practicalities of his pump. A personal support worker visited twice weekly to help with a shower.

After setting up his “team,” Claude focused on living.  And living he did – not for the expected few weeks to a few months – but for just over four years!  Throughout the four years, Claude had objective evidence that his heart function was very fragile.  He also wanted to be as active as possible, at times over stretching the stamina of his heart.  Together we reviewed his symptoms and found the best approach stabilize, then optimize his heart’s very limited function.

Claude had constant swelling of his legs, but often the swelling increased with associated limitations of his physical activities, demonstrating the weakness of his heart.  We controlled this swelling by optimizing his heart function with the addition of a new diuretic, Metolazone. We started with one tablet daily for one week. The benefits were tremendous. Claude felt better and increased his functional ability without causing more electrolyte imbalance and without aggravating his low blood pressure. However, a few weeks after we stopped the Metolazone, the swelling in his legs increased. Claude asked to repeat the course, and again he obtained great benefit. Eventually, he asked me to prescribe the Metolazone continuously, and he would decide when to take it or not. I never worried about Claude taking the lead for his medication regime. I knew he would not abuse it. He wanted to be as functional as possible. Still, I continued to monitor him closely, looking for signs of deterioration.

Claude had had severe episodes of dysrhythmias of his heart, requiring the insertion of a defibrillator.  Six months after I started to care for him, his defibrillator malfunctioned. He felt he was well enough to have it replaced and organized the appointment himself.

Near the end of the year, after a shopping trip with his friend, his friend closed the car door too quickly and ripped the skin off the lower lateral part of his left leg – an area of about 10 x 30 cm. With his anticoagulants and his leukemia, he bled profusely. This bleeding was potentially life-threatening! Claude did not panic.  He acted and controlled his problem by walking over to the adjoining retirement home and convincing the frightened nurse to dress his wound for the night. He called me and the home care nurse the following day to ask us to provide ongoing wound care. It took about three months to heal, but it did heal without the need to go to the hospital. His body rebalanced.

Near the end of his third year, Claude had another life-threatening complication – a heart attack!  Claude, pleased with his heart status and functional ability, decided to go to Florida to Disney World with his daughter and two grandchildren.

I was apprehensive, but Claude continued to be very pragmatic – what could go wrong?  The trip was only for a week.  He promised he would pace his activity and stay in a hotel much of the time. I assessed him before his trip – he was fragile but stable.  I visited a few days after his return. He had a wonderful time with his family. On further questioning, he admitted that while sitting quietly in his wheelchair at the aquatic center, he developed severe chest pain.  He knew he probably had a mild heart attack having had many in the past. But he did not panic, and he told no one. He just sat very still for a few hours, watching his grandchildren having a wonderful time. When he arrived back at the hotel, he immediately went to bed and had a long nap. On awakening, he felt much better. His pain did not return, and he tolerated the trip home well.  But for two weeks after his return, he suffered the consequences of using so much physical energy. He had extreme fatigue, was weak, and did not look well. Then he developed a fever, a cough, and signs of pneumonia. I prescribed an antibiotic for two weeks. He was prudent. He rested in his apartment and did not try any outings. It took him a month to recover, almost back at his baseline functional ability.

Premonitions Demonstrating Progression:

In the summer of his fourth year, Claude started to feel weaker. We could see definite signs of less reserve energy. He used his scooter less often, and by the autumn, he removed it from his home using a taxi or his daughter as a driver for any excursions outside his apartment.  Claude’s hemoglobin was lower than usual.  He wondered if a blood transfusion would be helpful. After the transfusion, he stated he felt a little more energetic.  His physicians were just relieved that his cardiac function remained stable.

Fusion of the Science with the Art of Near-End-of-Life Care at a Lower Functional Level:

A few months later, he had a dizzy moment on his way to the bathroom, slipped to the ground scraping his arm against a table.  He did not bleed, the wound was minor, easily cleansed and dressed. Now, I was more concerned about Claude’s heart. He was weakening, using his walker to get about his home.  The swelling in his legs had increased and did not resolve despite rest, elevation, pressure stockings and fluid restriction.  I felt the fall was just the more obvious sign of the progression of his cardiac failure and that it was precarious for him to be at home alone. I suggested that soon he would need attendant care to remain at home.  Claude refused.  And in the next month, as always, he seemed to improve and feel stronger.

Five months before his death, Claude had another significant fall.  He had awakened at night to go to the bathroom, and after sitting up and resting his head on his walker before standing, he fell asleep.  His walker slipped away, and he crashed onto the floor.  He had severe hip and pelvic area pain and could not get up.

He called 911 to have the paramedics lift him and place him onto his bed.  After a day he agreed to x-rays of his hip and pelvis to rule out a fracture.  There was no obvious fracture.  He was given small dose of Hydromorphone if he needed it for the pain.  For the first few days, he felt better. Then the pain increased again.  If he took the pain medication, he felt groggy and precarious for another fall.  Claude finally agreed he needed help to stay at home.  He had workman’s compensation due to the link of his illness to Agent Orange.  He was offered a day attendant twenty four hours a day for his care for two weeks, and eventually, the workman’s compensation agreed to ongoing attendant care.  Claude improved slowly and after several weeks, his pain subsided.  But his stamina did not improve to his former level.  He just could not ambulate to the washroom independently nor make his simple meals. He agreed to continue his attendant care.  With that help, Claude was able to preserve some energy and began to have a little reserve each day.

As I had come to expect from Claude, he started to plan for more activity.  He called the agency providing his attendant care.  They allowed his attendant to accompany him in a taxi to go out shopping or banking twice weekly.  Again, he saw that his blood count was low.  So, he asked the hematologist to order another transfusion.  This time he felt no benefit, and, worse, he accumulated more fluid in his legs.  He was satisfied now that transfusions would no longer be beneficial.  Claude did not ask me for more frequent visits, but I knew a crisis would happen soon and increased my visits to twice weekly.

Destabilization:

One week before his death, Claude went out with his attendant to shop for clothes on two consecutive days.  A few days later, he developed what appeared to be a viral respiratory infection.  Because of his leukemia and his worsening cardiac status, I started him on an antibiotic to prevent bacterial pneumonia.  He felt a little better for a few days, then developed severe diarrhea.  I advised him to limit his activity, take only clear fluids orally and use Imodium.  He settled, initially, for a few days.

Death Imminent:

On the day of his death, Claude had moments of consciousness early in morning with the attendant’s care even requesting to go to the bathroom. When his daughter arrived, she asked him to squeeze her hand if he understood her.  He did, still he was too weak to speak. Within an hour, he became nonresponsive, and his irregular breathing commenced.  He stopped breathing a few minutes later.