END OF LIFE IN CANCER CARE – DIFFICULT CONVERSATIONS AND SHARED DECISION MAKING PATIENTS AND THEIR FAMILIES

When it rains it pours so goes the common saying. This week it has poured painful good-byes patients and their families have to endure at the end of life. You are surprised right? After all she is an oncologist what does she expect?  Actually I expect a lot different! Cancer is not equal to terminal so death is not always the prospect in mind.

Sometimes the unfortunate happens when the first encounter of the patient and the health system is at that point where you cannot cure the patient. Both you and your patient know this and that uncomfortable conversation has to be had.

You are not The Creator to know whether an attempt will lead to more life or death, but what we do dress ourselves in are our statistics from previous experience. A common question is ‘how long do I have to live doctor?’ My common and genuine answer is ‘I don’t know’. The numbers can say eighty percent of patients are alive at five years or two percent at three years. I always tell my patients I don’t know whether you fall in the eighty, twenty, two or ninety-eight. However, what we could do is analyse certain factors and determine what would work for you.

I will share two common scenarios we face as medical practitioners.

Scenario 1: Mr X’s case was brought to me my attention by a colleague. They were acquaintances with a relation and he found the narration of disease to be odd and decided to consult. Mr X, a 70-year-old gentleman, was successfully treated for prostate cancer four years prior. His disease was considered high risk but curable from the onset and he faithfully underwent treatment and attended reviews as scheduled. About a year ago he started having persistent backache for two months then one morning he couldn’t walk. A week later his case landed in front of me. At that point all he could do was wiggle his toes. An MRI scan of his back shows the problem area and it was a debate of do we operate or do we radiate. No right or wrong, both modalities with their own risks. Now Mr and Mrs X were lovely people. Understanding, non-demanding. Honestly I was in doctor heaven when it came to handling this family. The decisions though were agonising were made in a rational logical manner. All we wanted was for Mr X to have a good quality of life. Literature tells us such patients have 6 months to live but we have seen patients live beyond and beyond these set times. So was it worth it to operate or should we have been conservative. My clients read what they could, listened to what I had to say and then we discussed the best options. The joint decision plan was to give radiotherapy, continue with hormones and attempt chemotherapy.

Mr X received the radiotherapy and gained some power back in his legs, enough to walk around the house for basic functions. He also continued to receive his hormones. However, when the time for chemotherapy came they decided not to go through with it. He went on to enjoy seven months with his family before going to meet his maker.

I remember the weekend he died he was so peaceful. He had asked not to be admitted unnecessarily for as long as possible. His wife much unlike our typical African culture was also poised and ready for the moment. It was painful yet they had spoken about it. I was asked to stop all active intervention and he slipped away peacefully.

Scenario 2: Mrs Y, a 60-year-old lady diagnosed with endometrial cancer. She had a large and caring family, each member having their own opinion on how things should happen. According to them their mother and grandmother was too old to undergo any form of active treatment. Each family member had a person to consult who was also a specialist in cancer care. Including people abroad! It is worthwhile mentioning that when Mrs Y first came to the hospital her cancer was in a curable stage and the only other illness she had was hypertension which was controlled but there was concern from the family that they could not bear putting her at risk of an operation, which is the standard of treatment for cure of endometrial cancer. We never even got to see an anaesthetist. As per the nature of disease bleeding was a major problem. We offered radiotherapy but that was declined. It was feared the side effects might cause her premature demise. All by consultation from people who could not see the patient or the facilities we have locally. Medical-family meeting were hardly ever completed in context. Mrs Y went on to live four months from the time I first met her. She was frequently admitted with bouts of heavy bleeding and was in agonising pain until the day of her demise. She complained she missed her home on the Copperbelt. The day she died she was moved three times from department to department seeking interventions that may ‘help’.

The differences between the scenarios are obvious. Shared decision-making and mutual respect is the most effective way to take care of a patient with incurable cancer.

Why is it so effective? The doctors and their teams bring their medical knowledge, the family bring knowledge about the patient. This combination is powerful. When one side of the party shrinks under duress of the other certain things are overlooked which is detrimental for patient care.

Another mistake made is that one meeting is enough but that is not true. Multiple meeting may be necessary to re-evaluate the benefit of the interventions. An incurable cancer patient is a delicate balance between not giving up too early or fighting too long.

Geography, finances, character and family dynamics all have to be taken into consideration. A good website to get more information on cancer is cancer.gov. Well researched simplified information.

 

Leave a Reply

Your email address will not be published. Required fields are marked *