Being Mortal — A Book Review
“Being Mortal” by Dr. Atul Gawande is a gem of a book. All of sir’s books have taught lessons in such a compelling way that it changes your perspective, and helps to garner a sense of appreciation for this beautiful field. Although this one does the same, it is in a highly personalized and emotional manner with a section where sir talks about his reflections on his father, Dr. Atmaram Gawande’s demise.
It all starts in 1943, when Maslow, a psychologist published a paper titled, “A theory of human motivation”, which theorised people as having a pyramidal hierarchy of needs. At the bottom are the basic needs — food, water, air, and safety. One step up is the need for love and belonging. Above that — is the ability to attain personal goals, master skills, to acquire knowledge. Finally, at the top, there is self-fulfillment, i.e, attaining what we want through our moral principles and ideals.
Our driving motivations in life are constantly in motion — when we are young, our desires are on the top of the pyramid. As we age, our capabilities and options become limited, and we tend to focus on the foundation — safety and survival.
But this does not sound right, does it? People are readily willing to sacrifice their comfort and living for something beyond themselves, whether it is the safety of their family, children, or justice. And this is independent of age!
So, hospices that work to provide just safety and survival are faulty. We need more. But why does assisted living often fail, in the first place?
To genuinely assist with living means to let people do what they can with maintaining their abilities, and helping with what they are unable to do. For example, dressing somebody is easier than letting them dress on their own. It is easier to pretend that they are rag dolls, and do the entire process of clothing them without even considering their capabilities. This attitude has to change.
More importantly, assisted living attracts children more than their parents. That is because they decide where their parents live by observing the visuals — a hotel-like place, where is everything accessible and safe. This is in view of the fact that in the eyes of the children, those things matter — not family, friends, routine. Not the environment their parents are familiar with, but where they are safe.
Another essential idea is to preserve autonomy. Illness and old age are hard enough struggles. Institutions should not make it worse — all of us have the autonomy to be authors of our own lives, we need to expand our choices, not confine them.
We need more, as I have written before. But what?
We are looking for a reason to live.
Can older people with dementia, depression, or tragedy experience life with greater meaning? Would it be possible to provide them with reasons to live?
Bill Thomas, a physician from New York, and his wife developed the Eden Alternative in the early 1990s as a philosophy to deinstitutionalize long-term care facilities by alleviating the three plagues of boredom, helplessness, and loneliness. They induced fundamental changes in the relationship between staff and management and famously introduced pets, gardens, and children to nursing homes. In his book, he talks about a Mr. L who was depressed and attempted to crash his car in a ditch after his wife of more than sixty years died. Even at the nursing home, despite taking antidepressants, he spiraled down. Only when the program started, did he take to taking care of the parrots that had been introduced by Dr. Thomas. He began to enjoy their company, advise the staff about their upkeep and take the dogs for a walk. Three months later, he moved back to his home — happy and healthy.
So, yes. It is possible to provide people with reasons to live. It happened to be a very significant finding — after all, there was a solution. Our job is to find ways to implement it.
But why does simply existing seem empty and meaningless to us? What makes life meaningful?
The 1908 book by Harvard Philosopher Royce, tries to answer this question. He says that we all seek a cause beyond ourselves — whether it’s family, a moral principle, or establishing a legacy. We ascribe value to that intrinsic human need. Living by it — in the sense, making sacrifices for it, giving it more value than our health/living — gives us meaning. Strongly striving for this principle too makes our lives meaningful.
Let’s talk about what standard medicine can learn from doctors and nurses in Hospice. I always believed that the difference between the two lies in doing something and not doing anything. But that is not the case. It is about what is prioritised — in standard medicine, the aim is to sacrifice the quality of life now for the chance of gaining time later. Hospices work to help people with poor prognoses live the fullest possible lives now, in the present.
With supportive hospice therapy, a patient lived for a year when she was earlier told by doctors that she had only a few weeks left.
Dr.Gawande also writes about a landmark study in 2010 where researches from Massachusetts General Hospital, assigned half of 151 patients to general oncology care, and the other half with that in addition to palliative care. The result: those who saw chemotherapy sooner entered hospice sooner, experienced less suffering, and lived longer! Another study with over 4000 patients found similar results. Lung cancer patients gained six weeks, congestive heart failure victims gained three months.
So why does everyone not choose to go to a hospice at that stage in life?
The problem is, that hospice enters one’s life when they have understood that they have a fatal illness but have not acknowledged that they are dying.
We think we have time. We think that people will have years more to live, and the discomfort at that stage is a risk worth taking. Some of us are illusioned by the fantasy of Medical Science — a majestic field that has years of experience with death and hundreds of machines that coordinate with themselves to avoid it — can it not help?
The question now is how to navigate these situations? How do we have difficult conversations? How to know what is best then?
When the chemotherapy stops working, when the next step is to take high-risk surgeries, or worse — when the next step is unknown, you enter the “breakpoint discussion”. It is a series of conversations where there is a switch from fighting to accepting one’s fate. Few people have these conversations — they are dreaded because if handled poorly, then there is the risk of losing trust and unleashing difficult emotions. But if done right, the reward is relief and clarity.
The key is to ask, tell, ask:
- Firstly, what is their understanding of what is happening to them?
- What are their fears, say, if that happens?
- What were their goals if their condition worsened?
- What were the trade-offs, if any, that they were willing to make to stop what was happening to them?
This list surprisingly answers all the three questions posed above. But both asking them, and answering them are difficult. I can not imagine implementing this in the long run, and I am sure to feel overwhelmed at the risk of breaching privacy or losing trust. But I can see how clear the process of decision-making would be, after having the conversation. The book has a few examples of the above, and I remember feeling deeply moved while reading those sections.
Being a doctor means seeing people in their most vulnerable state. This book has amplified the importance of maintaining a good doctor-patient relationship. It has shown how powerful the right set of words uttered at the right time can be. But by far, the biggest lesson is to be prepared — to be cautious, ready and strong for the tough times ahead.
Pic source — https://www.simplypsychology.org/maslow.html
