Terminal Illness: What does it mean?

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Alex with Dr Ken Stevens

I recently spoke at the British parliament about the experience with assisted suicide in America. This is an important topic since the British parliament is currently debating the legalization of assisted suicide. The British assisted suicide bill that is sponsored by Kim Leadbeater is similar to an American style assisted suicide bill.

While in London England, I had the opportunity to share time with a physician friend who is practising palliative medicine. She told me about a recent meeting with a patient and her family to explain that the patient has a terminal condition but she is not terminally ill.

This situation is essential to the assisted suicide debate in the UK because people who are deemed to have a terminal condition would qualify for death by assisted suicide, if the bill is passed.

In 2011, Dr Ken Stevens, a long time radiation oncologist in Oregon, wrote an excellent article titled: Terminal Illness: What does it mean? The article is a few years old but his experience is timeless. In his article Dr Stevens writes about several of his patients who were diagnosed with a terminal illness.

The first story was a patient, Mr Jones, who was diagnosed with lung cancer that had spread to his brain. Dr Stevens explains:

He was not having any breathing problems and, except for headaches, the tumors in his brain were not causing any neurological or mental problems. Yet, his doctor had told him and his wife that he was "terminal."

Dr Stevens asks, what is the meaning terminal? Does it mean "terminal" (nearing death) or a terminal condition? Dr Stevens continues:

A patient's terminal status can be dependent on treatment. A person with severe insulin-dependent diabetes mellitus could be considered terminal if they did not take insulin appropriately. However, with proper insulin treatment and diet, they can live a long time, even many decades. Patients with kidney failure requiring dialysis would die in a few days without dialysis; in that sense they may be considered terminal, but with dialysis they can live many years.

Dr Stevens tells the story of a family member who was diagnosed as terminal from pulmonary fibrosis. He writes:

four years after she received the "terminal" diagnosis, she still has terminal pulmonary fibrosis that requires constant supplemental oxygen and still lives in her home with her husband, who has his own significant medical problems.

Dr Stevens emphasized that his family member continued living and enjoying the companionship of her family.

He then told another story of a patient who was diagnosed as terminally ill. The man and his wife responded to the diagnosis by selling off their worldly items. They even planned to sell their house, but he didn't really feel sick. After more biopsies were done it was determined that he actually had a non-terminal condition. Stevens writes:

In the past seven years he has had CT scans of his chest and abdomen every six months. The abnormalities in his liver and lungs are still present but have not changed in number or in size. He has continued to work for a computer company and misses the tools that he sold at a great discount In the past seven years he has had CT scans of his chest and abdomen every six months. The abnormalities in his liver and lungs are still present but have not changed in number or in size. He has continued to work for a computer company and misses the tools that he sold at a great discount or gave away in garage sales when he was told he was terminal.

Dr Stevens tells the story of a patient who was diagnosed with liver cancer that had spread to her chest. She was told that she didn't have long to live but she was still alive 20 years later.

Dr Stevens tells us the story of an 18-year old college student who was diagnosed with the most malignant type of brain cancer. Dr Stevens write that many doctors did not expect him to live long. Dr Stevens writes:

However, he surprised them when he graduated from college, then attended and graduated from law school, passed the state bar exam, married, had two children, and was elected to his city's council. He lived a very successful and productive life for over 20 years from the time of his terminal diagnosis.

Dr Stevens brings the article together by telling us what happened to Mr Jones. He writes:

After evaluating the extent of Mr. Jones' tumors, I offered radiation and chemotherapy to shrink the tumors. He accepted that recommendation and successfully completed the treatments with his tumors markedly decreased in size. He lived to spend two very productive years with his wife and children. They traveled together, and he lived to see the arrival of two additional grandchildren. Both he and his wife were very grateful for his prolonged and very functional life.

Dr Stevens concludes by writing:

My 44-year experience as a doctor for many thousands of patients with cancer has made me realize that it is very difficult to predict the life expectancy of a particular individual. Doctors can make generalized predictions regarding probability of death for a group of patients in a particular period of time, but that is a probability based on the group as a whole and not on specific individuals within the group. There is great variability in the course of an illness, particularly in those who are predicted to die many months from now.

My palliative care doctor friend in Britain, who I first referred to, explained to her patient and family that she might have another two or more years to live and that she was graduating from palliative care.

The doctor asked me, with concern, what if assisted suicide was already legal in Britain? Would this woman be dead?