Take-home Message

Home-based palliative and supportive care

(Fictional narrative by the doctor)

James Fleck, MD, PhD: Anticancerweb 14 (09), 2019

Charles completed all proposed treatment. He had some adverse events during induction chemoradiotherapy, mainly associated with a grade-4 esophagitis, which required a nasogastric tube insertion, maintained for three weeks. A dose-intensity of 100% was achieved and a complete clinical response was observed after treatment’s induction phase. He was additionally treated with consolidation immunotherapy (durvalumab). 

I closely followed all Charles treatment, which took around 15 months. During treatment’s consolidation phase, he showed a grade-2 pneumonitis and hypothyroidism, which completed disappeared two months after finishing the 12 scheduled-months on durvalumab use. At that moment, he was asymptomatic. Even the previously reported pain in the legs (osteoarthropathy of the tibias) had completely disappeared, he gained weight (almost 15 pounds) and his lab tests were normal. I recommended a three-month follow-up and he was discharged. 

Two years had passed…

Charles's most recent clinical review showed no major changes in his physical exam, laboratory or imaging tests. Although there was no evidence of lung cancer relapse, he had mentioned progressive weakness and prostration. I suggested that he return to my office within a month, considering the subjectivity of the complains.

Charles returned in two weeks. He came back earlier because he needed to talk to me. 

It was unusual considering his characteristic elusive behavior.

He sat in front of me and said he was not standing the burden of his life anymore. His family was of no help and were indifferent to his daily routine efforts. His business was not going well, and he would have lost almost everything he had built in his life over the past six months. He justified the situation technically, saying it was due to an unfavorable dollar exchange rate and instability in the commodity export market.

For the first time since I met Charles, he finally expressed his concerns.

Rose had left him for almost a year.

Charles was suffering alone. He had lost Rose's emotional support.

Charles had never revealed the importance of this extramarital relationship, but the loss had been unbearable to him. Something had happened, creating emotional instability and threatening his desire to be alive. Charles had lost his resilience. He was weak, insecure and very depressed.

I listened carefully, waiting the right time to suggest psychiatric counseling.

After a while, I recommended Elias, a psychiatrist I worked with in similar family crises. He used to take a comprehensive approach, dealing well with combined organic and emotional illnesses.

Charles accepted my suggestion with no resistance, and immediately called Elias asking for an appointment as soon as possible.

It was nine o'clock at night when Elias called me.

Charles attended the consultation and was very receptive to psychiatric evaluation, describing in detail the most relevant aspects of his personal and family life.

Charles history was marked by a family legacy. He had lost his mother at birth. He didn't know the details, but he had heard comments that she was diabetic and died of infection two weeks after delivery. He was raised by his father and a maternal great aunt. He had an older sister who had married an American missionary and never heard from her again. She would have emigrated with her husband to a North African country. Charles had just turned twenty and had started law school, when his sick father asked him to interrupt his studies, considering the urgent need to take care of the family business.

The shoe factory was a family venture made up of his father and seven other brothers. Charles's father was the majority partner. The others worked in the technical sections of the company and had low education, which prevented them from assuming positions of decision. All the brothers and their relatives depended on this company.Charles assumed the legacy with responsibility and determination. His father had a stroke a few months after transferring commercial responsibility to the son and had severe neurological sequelae. He lost self-determination, had difficulty expressing himself verbally, and was restricted to a wheelchair for ten years.

Charles transferred his law school to a night shift and graduated five years later. He never worked as a lawyer, but used his training for benefit of the company. The company thrived, but Charles spoiled his youth. He slept only six hours a day, including on weekends. He had no friends and did not socialize. He was 28 when he met Eleanor, the only daughter of his company's accountant. They married three months after their first date. Eleanor was very young and had never worked. Charles insisted that she only take care of the house, as he would assume the role of provider. But, it wasn't just the housework. Young Eleanor, full of energy and enthusiasm, also supervised her father-in-law's care. The marriage gradually turned into a triangular life, composed by Charles, the company, and the woman who cared for her sick father-in-law. Eleanor was very responsible and passively assumed her role. Over time, the children arrived and were gradually framed into the rigid family profile. Usually, the relationship expressed no feelings, only revealing laborious coexistence. Charles increased his obsessive-compulsive characteristics by being very picky with Eleanor. He defined her duties, complaining of any minimal inattention to the care of the children or father-in-law.

Twenty years have passed, repeating this stereotypical lifestyle.

The company improved and Charles had to travel most of the time.

On a trip to Sao Paulo, Charles met Rose, an intelligent and communicative woman who works as an event promoter at a leather shoe fair. They started an extramarital relationship. Rose was completely different from Eleanor. Very enthusiastic about her work, she wanted to remain independent, just exercising her creativity. Charles was already a wealthy man and began to enjoy the company money with Rose. They usually didn't spend much time together, but Charles used to describe them as the best moments of his life.

Rose knew all about Charles's family dynamics and his responsibilities in an inherited company, accepting without conflict. She loved him unconditionally. Charles used to fell free in Rose's presence, a feeling he had never experienced in the past.

This relationship went beyond casual dates, because Rose had helped him deal with hepatitis C. Charles was grateful to her, although he generally did not accept interference. He disliked showing frailty. Although disciplined in obeying medical recommendations, had always kept his family and affections away from any kind of personal suffering. A behavior that would be further reinforced during cancer diagnosis and treatment.

When lung cancer was diagnosed, Rose was uncomfortable dealing with this situation. After the onset of the disease, their encounters became less and less frequent. The vivid sensation of the beginning was replaced by progressive unavailability and mismatched times. Charles was uncomfortable with Rose's multiple attempts to help him. He had become aggressive and impervious to her affective arguments. He gradually assumed no health to maintain the relationship.

Charles began to reproduce with Rose the same emotional shield he used to impose on his family relationships.

Following the conflict, Rose was invited to work on a project in Milan and accepted. Charles had described Rose's decision as selfish and no longer answered her phone calls.

After a while, Rose didn't call anymore.

Charles lost his emotional anchor and plunged into an obsessive routine.

Despite their best efforts, the company was not doing well. Charles was no longer motivated to deal with the business. However, he did not ask for help because he had not prepared his children to take control.

He had lost hope and was not motivated to stay alive.

Despite holding three meetings a week, Elias saw no progress in Charles's emotional situation.

I was overseeing his clinical condition with monthly appointments and explained to Elias that Charles had recently worsening liver function tests. These findings would explain many of the most recent symptoms, suggesting a progressive liver damage.

I recommended a review with the gastroenterologist, who got surprised at how quickly the liver changes occurred. He had examined Charles two months ago and none of it existed at the time. He had the impression that some new event was happening.

Charles returned to my office accompanied by Eleanor.

Charles had lost weight, showing an expression of pain and apathy. The level of consciousness has changed. He looked sleepy and confused.

On physical examination, I noticed signs of portal hypertension. There was ascites, an increase in abdominal volume caused by fluid retention in the peritoneal cavity. His liver was enlarged. There was a loss of balance to the point that it was impossible to walk without support. The skin was yellowish in color, typical of bilirubin impregnation, a finding known as jaundice. The clinical diagnosis was portosystemic encephalopathy.

I communicated Eleanor about the most relevant findings from the physical examination and told her that Charles would have to undergo a CT scan of the abdomen. At the same time, I requested new liver function tests and kept in touch with his gastroenterologist.

Soon I received the test results.

His tomography revealed the presence of two tumor masses of more than three centimeters, the largest in the right lobe of the liver and the smallest in the left lobe. In addition, other minor lesions were spread throughout the liver. A tumor marker called alpha-fetoprotein increased significantly and the liver function tests were greatly altered.

Complementary evaluations showed that Charles, in a short period of time, developed hepatocellular carcinoma.

This tumor can be related to hepatitis C and liver cirrhosis, but usually its clinical presentation is not as fulminant.

At that time, his illness was incurable. Considering his current liver function, not even palliative treatment could be offered. Adverse events would be greater than any potential and temporary benefit.

Charles would die soon.

He apparently didn't understand what was going on. Physically exhausted, his facial expression was distant and uninterested. Indifferent to everything and everyone, he was not expressing physical or emotional suffering.

Even so, I explained to Charles that his liver had problems.

I intentionally omitted the details and prognosis, as he interspersed moments of fleeting attention with a state of unconsciousness. I explained that we would take care of him at home and that I would adjust with Eleanor the details of his assistance. I told Charles that he might need to be admitted to the hospital if his condition required additional care.

In an unsteady state of consciousness and holding my hand, Charles nodded.

Portosystemic encephalopathy is a terminal manifestation of hepatocellular carcinoma. This translates into such extensive liver damage that it leads to organ failure. The suffering related to this situation is relative, as the metabolic trauma pushes the patient away from reality and progresses to coma.

I explained the situation in detail to Eleanor and her children. I suggested that Charles could be kept in home care with the help of nursing professionals. I would see him at home whenever necessary, and together with his gastroenterologist, we would organize his medications and nutritional care. I also offered to take care of him at the hospital and that this decision could be made at any time, depending on Charles's clinical course and the needs of his family.

Despite being a difficult situation, Eleanor was calm. She seemed resigned and cooperative, favoring home care. I talked to the children and asked for their understanding and collaboration.

Two days passed and Eleanor requested a home visit.

Since I was anticipating it would be an unpredictable appointment, I arranged with Eleanor at night when all my activities were over. Eleanor informed me that Charles was stable and explained that the children were also going to attend.

It was 8 pm when I rang the bell.

A family worker kindly led me to Charles's room.

Eleanor had hired a team of well-trained home care professionals. A hospital-designed bed had been installed to facilitate daily routine. A nurse was holding the patient's chart, where she had taken vital signs and written progressive notes in the last 48 hours. Charles was sleepy, expressing no suffering whatsoever. The daughter was standing at the head of the bed, holding Charles's hand in a caring and affectionate attitude. The other two children had placed the chairs near the bed and were trying to have a nice conversation with their father whenever possible. Eleanor was overseeing the whole situation.

I had the impression of a genuine expression of family affection. The atmosphere was serene. They understood Charles's clinical situation and accepted his terminal state.

The conflicts were left behind.

In my life as a doctor, I have learned that forgiveness is the least traumatic scar.

I examined Charles and found that his level of consciousness had deepened even more over the past two days. However, their vital signs remained stable. An IV was installed that kept him properly hydrated and also provided some caloric intake. Whenever his level of consciousness allowed, he was given a light meal. The family was actively participating in all necessary care. He responded to verbal stimuli by opening his eyes, but his attention quickly dissipated. His facial expression did not suggest pain or any other discomfort.

Leaving the room, Eleanor asked me to talk to her children.

We met in the living room.

They said that Eleanor had already spoken to everyone and all were aware of the seriousness of the current situation. They also had a meeting with Charles's psychiatrist.

They vented that their father had a kind of weird temper, but they respected him very much and acknowledged his efforts to take care of the family and business. They knew that from an early age he had assumed a family legacy. They understood that this was the main reason for an apparent emotional detachment. They had mixed feelings about the company, but they would think about it later.

They asked how long Charles would live and expressed a desire to stay with him as long as possible. They didn't want Charles to go to the hospital, they preferred to keep him in home care. I was asked not to authorize the use of respiratory or dialysis devices that unnecessarily prolonged the suffering of the father.

I answered all the questions and considered the children's requests.

The whole family walked me to the door and with tears in their eyes thanked me. A sense of human comfort invaded me, which greatly gratifies the practice of medicine.

Although it was almost midnight, I turned on the speakerphone in my car and called Elias.

I knew he was not used to sleeping early and was always available to discuss the cases we had in common. I was thrilled at how he had worked on Charles's family dynamics.

He informed me that Charles had requested his intervention and that he would have arranged some meetings with Eleanor and the children. His comprehensive view of Charles's situation had helped guide this family, marked by an emotional blockade. They were intelligent and sensitive people who quickly benefited from Elias's interaction.

I emphatically thanked Elias for his valuable participation.

Charles died at home three days later.

His breathing rate became progressively more irregular, leading to a cardiorespiratory arrest.

All family members gathered together at that time.

I arrived at Charles's home a few minutes before he died and noticed that Eleanor and her children had the opportunity to say goodbye to Charles. They had expressions of affection and recognition. They were not religious, but they wanted Charles to follow a path of light.

All were resigned and at peace.

Two weeks after Charles's death, Elias asked me for a meeting in his office. He mentioned that he needed to discuss a case with me.

We chose the best time for both of us and organized the meeting.

We had never done this before and I assumed it must be a difficult and delicate situation.

Just in time, I entered his office.

Elias was waiting for me. He was holding a business card, given to him by Charles on his last appointment.

He handed me the card, asking what we should do?

It was Rose's professional card.

When I turned the card over, it was handwritten on the back with trembling letters.

“Thanks for a lifetime. With love, Charles "...

To be continued in PLOT 6 (resolution)…

* Attention: The story 4 will be published sequentially from PLOT 1 to PLOT 6 and you will always see the most recent posting. To read Story 4 from the beginning, just click in the numbered links located at the bottom of the homepage. 

© Copyright  2019 Anticancerweb

© James Fleck, MD, PhD: Full Professor of Clinical Oncology at the Federal University of Rio Grande do Sul, RS, Brazil 2019