Being Mortal by Atul Gawande looks at the aging process and the medical decisions that are being made by the person who is aging, their family and the medical community who is providing services to the person. The subtitle of the book is: Medicine and What Matters in the End. A subtext in the book is everyone dies of something so mortality is a fatal illness. Provided throughout are the questions that need to be asked and answered as early as possible to guide the choices that will need to be made at different stages of aging.
The author presents information from gerontologists, medical personnel who specialize in aging and palliative care experts who provide information to help the person and the family make critical choices at different stages in the aging process. Dr. Gawande recounts his observations from patients he has treated and his own family facing the conditions related with both aging and facing critical illnesses, with the objective of assisting the person to live the best quality of pain-free life as possible under the circumstances present, with the hope of having an easier time leading up to the moment of death.
There are many time frames that are discussed in the book, from the initial stage of being self-sufficient in a person’s own home but with signs of aging being undeniable to the final choice of whether to die at home or in hospital.
In chapter 2 – Things Fall Apart – Dr. Gawande has inserted three charts: The first chart is a straight line with a sharp drop-off to death, like a cliff. The second chart looks “more like a hilly road down the mountain.” The final chart is described as “The curve of life becomes a long, slow fade.”
It appears now that genetics plays less of a role in how long we will live than most of us believe. Further, it has been argued “…that human beings fail the way all complex systems fail: “randomly and gradually.” This raises the question of how best to plan for the eventual outcome.
In the book, most of the people were conflicted about how to plan for the random and gradual approach of becoming old. Many people are resistant to the idea of moving out of their own homes into assisted living and progressively more “medicalized” versions of group living. Most people felt like they were giving up too much of their independence in response to family and medical concerns about safety, such as falls, failure to take medications properly and nutritional concerns.
“With luck and fastidiousness – eating well, exercising, keeping our blood pressure under control, getting medical help when we need it – people can often live and manage a very long time.” However, the author points out, most of us don’t want to think about the point at which we cannot live independently.
Eventually, events associated with aging begin to happen, such as falling down. When an individual has a fall after a certain age, it is far more serious and more likely to occur again. Another involves difficulty swallowing food due to the aging process, which causes the head to tip forward. These aren’t caused by diseases but simply occur because the body is getting older. At a certain point, independent living comes into question. However, these are not medical conditions and are generally not addressed by the medical community.
One important issue addressed by the book is the dearth of medical professionals trained geriatrics. Most doctors are not trained to “treat” patients going through normal aging. A study indicated that when elderly were treated by geriatric nurses and doctors, they were a quarter less likely to become disabled and half as likely to develop depression. And, they were 40% less likely to require home health services. The people were given basic medical care appropriate to the aging process, like proper foot care to help avoid falling, also making sure their medications were taken properly, and so on.
Unfortunately, economically it doesn’t pay enough for people to go into the field. This brings us to the point when aging is treated as a medical condition and the aging person is encouraged to go into a living situation where they are not isolated. The book discusses many different approaches to group living, some of them highly successful individually but not necessarily reproducible on a large scale. And, the tendency is to attempt a safe, but not necessarily satisfying, environment.
In a safe environment, there are 3 plagues presented in the book: boredom, loneliness and helplessness. Plants and animals have helped in some places; adding young people also yielded positive results. However, this model has not be implemented on a large scale basis. Somehow, there must be a way to make lives meaningful in old age. “…the insight was that as people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives – resisting the urge to fiddle and fix and control.”
The book makes a shift in chapter 6 entitled Letting Go and we get to the mortality part. There’s a shift because we’re dealing with conditions that have been identified as fatal illnesses, squarely in the medical world. And the question is posed: What do you want from the doctors if you have a fatal illness? Doctors may have treatments that they believe could hold death off but could negatively affect the quality of life. Many would seem to be prohibitively expensive, especially as weighed against limited results.
And what is the patient’s expectation? Or the family’s expectation? In the book, several patients asked “Am I dying?” Or the family would ask if the relative was dying. Often, the medical professional may hesitate but often will conclude that the person is not dying. However, they can only offer drastic treatments to save the person’s life, potentially for a brief, painful period and without any discussion of quality of life.
Often, the doctor’s belief is that the treatment will prolong the patient’s life and alleviate pain for a matter of months, whereas what the patient and family interpret what the doctor is saying to mean that the patient will live significantly longer and will have a vastly improved quality of life. This hope often leads to excessive and expensive medical intervention at the end of life.
Doctors are not good at estimating how much time a terminal patient has left (according to one study the average estimate was 530% too high). And although the doctor will tell a patient that the illness is terminal, they will often offer treatments they believe are unlikely to work. Often the doctor is thinking the patient might get a few months, but the patient often believes treatment could extend their life by 10 to twenty years.
The author notes that people with serious illness have priorities besides simply prolonging their lives, including avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others and achieving a sense that their life is complete. But traditional medical care fails to meet these needs. He also notes that swift, catastrophic illness is the exception these days.
There is a concept of the “long tail” in medicine. This idea is that some kind of experimental treatment will turn out to give some patient a longer period of life, although the doctor knows that the probability of it working for any individual patient is a long shot. The author describes it as a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets.
“Hope is not a plan.”
Often, the best choice might be hospice care or palliative care, but in order to start that care the doctor might be required to state that the patient has less than 6 months to live and the patient (and family) must face that their medical illness is fatal. Getting past the barriers and making the decision to enter hospice care is a change of direction
The purpose of hospice care is different than ordinary medicine, which is to extend life. Hospice care is intended to help people with a fatal illness have the fullest possible lives right now. This means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out once in a while. The author notes that it is not any easy choice for a person to make. According to one source, only about a quarter of the patients have accepted that they are dying at the point of choosing hospice. “Ninety-nine present understand they’re dying, but 100% hope they’re not.”
What happens with hospice or palliative care? Not all medications are stopped. The attempt is to control pain and make the person comfortable. Also, to give them a resource at this point in the process. There are regular visits and adjustments are made as needed to achieve the goals. Here is a list of questions posed by one hospice care worker described in the book.
- Do you have pain?
- How is your appetite, thirst, sleeping?
- Any trouble with confusion, anxiety, or restlessness?
- Has your condition (e.g., shortness of breath) grown worse?
- Was there specific pain related to condition (e.g., chest pain, heart palpitations, abdominal discomfort)
- Any trouble with constipation, urination or walking?
- Any new problems?
In La Crosse, Wisconsin, the medical leaders had a campaign to get medical people and patients to discuss end-of-life wishes and a form was developed that centered around four crucial questions:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
The result of filling in the questionnaire and having the discussion is that the doctors have some idea of how to proceed. A review showed that people in this system came off chemotherapy sooner and entered hospice care earlier without a reduction in length of life and an increase in the quality of life than in areas where there had been no discussion.
There are some rules for addressing the patient. You’re trying to learn what is important to them under the circumstances. What do they understand their prognosis to be, what are their concerns about what lies ahead, what kinds of trade-offs are they willing to make, how do they want to spend their time if their health worsens, who do they want to make decisions if they can’t?
When it comes to end of life treatment, the patient needs to address what trade-offs are worth taking. One of the major messages of the book, for me, is that it is better to make decisions about end of life and discuss your thoughts with your family and doctor. The decisions can evolve with your life. They are not fixed, but they are worth considering before a person is facing the end.
Deborah’s questions to think about:
- What is your reaction to looking at aging issues for yourself?
- I want to do everything I can to be prepared
- I think there are too many unknowns to be able to plan
- It’s too depressing to consider
- How much responsibility should the family be expected to take on?
- It depends on the relationship and resources
- The family should do everything possible
- Each person should make their own plans
- What do you think about hospice/palliative care?
- At home
- In a retirement community or nursing home
- Doesn’t make a difference
- What do you think about assisted dying?
- I’m uncomfortable about the idea
- I think it should be available when people are facing death that will be painful
- I think it should be available when people have been diagnosed with a fatal illness
- What do you think about the idea of a death doula?
- I’m in favor of having one available
- I think it’s too invasive
- I don’t understand what they have to offer