My recent read is Being Mortal: Medicine and What Matters in the End by Atul Gawande. I know it sounds a bit morbid (haha...) but I actually think about mortality a lot (every single day!) and it's not morbid at all. My perspective is if I make it another day, I am thankful that I have been given another 24-hour lease on life.
They say that people who think about death constantly are generally happier. The Bhutanese for example who have been tagged as the happiest people on earth, think about death not just once but 5 times a day as part of their culture.
Anyway, going back to the book, the author, Gawande is a practicing surgeon. Reading the first few pages got me hooked.
Gawande shared a story about a patient who had cancer that couldn't be cured. Doctors hoped it could be treated so they had emergency radiation but it failed to shrink the cancer. The patient was offered 2 options - comfort care or surgery to remove the tumor from the patient's spine. The hope was that the operation would halt the progression of his spinal cord damage. But it wouldn’t cure him, or reverse his paralysis, or get him back to normal life.
No matter what the doctors did, the patient had at most a few months to live. The procedure was also inherently dangerous and the recovery would be difficult.... The operation posed a threat of both worsening and shortening his life. But even if the neurosurgeon had gone over these dangers, the patient wanted the operation.
What happened? The operation was a technical success. Over 8.5 hours, the surgical team removed the mass .... the pressure on his spinal cord was gone. But he never recovered from the procedure. While in the ICU, he developed respiratory failure, a systemic infection, blood clots from his immobility, then bleeding from the blood thinners to treat them. On the 14th day, the patient's family told the team that they should stop and take off the artificial ventilator that was keeping him alive.
Heartbreaking story. But that story illustrates the dilemma of some doctors and the limitations of medicine. It was a disease that could not be cured. After the operation and the complications which came after, the chances of the patient returning to anything like the life he had even a few weeks earlier were zero, Gawande pointed out.
Most stories of real people we know (who got terminally sick) sound similar - doctors recommend one treatment after another, giving the patient hope that maybe something good would result this time and maybe it could extend one's life longer. Some successfully recover, but for some, it gets worse; they lose their quality of life and are physically in worse shape than before.
After hearing this doctor's perspective, it makes you wonder if a patient and his/her family are able to really fully grasp all the risks that come along with a procedure. Are they able to think through the probabilities shared by the doctor? Is 10% success rate for example worth pursuing given the risks involved? Does the potential positive outcome far outweigh the potential risks? If it were successful, would the patient live way longer than the average person who didn't get any intervention?
I remember a story relayed by my mom about an aunt who was diagnosed with cervical cancer in the 1980s. She decided to get cobalt treatment which I think was the best known treatment at that time (not sure though if it was still new or considered experimental back then). Around that same time, another person in their town was also diagnosed with the same cancer but she decided not to get cobalt treatment. The cobalt treatment weakened my aunt's body and she eventually passed away within several months or maybe a year since she was diagnosed. On the other hand, the person who never got cobalt treatment got to live more than 10 years. Would my aunt have lived longer if she didn't get cobalt treatment? We'll never know.
But deciding on what to do when someone is diagnosed is really a tough decision to make. Given the rollercoaster of emotions one is in, it would be almost impossible to think clearly and objectively as the tendency is to focus on the solution that would give us hope to extend one's life - no matter how small the probabilities are.
The author himself experienced this situation when his dad, also a surgeon, was discovered to have a tumor in his spine. His dad didn't pursue an immediate operation since he was more worried about what the operation might do to him (total paralysis) than what the tumor would. He didn’t want to risk losing his ability to practice surgery for the sake of treatment of uncertain benefit.
Because of foregoing the operation, Gawande's dad was able to preserve his quality of life and achieve what he wanted (which is to practice surgery) for several more years until symptoms worsened and the pain became untolerable. When he reached that point, that was the only time he considered having an operation. At every stage of the disease, the dad, together with the rest of the family, carefully weighed the probabilities and risks of every proposed medical procedure. The family also made sure that each decision made was what the dad really wanted.
Making sure what the patient really wants is very important, Gawanda emphasized. Apparently, about 2/3 of patients undergo therapies they don’t want, but they only gave in because it was what their loved ones wanted. Gawande cited common stories of patients like a grandparent who was put on life support against his wishes, a relative with incurable liver cancer who died in the hospital on an experimental treatment, and a brother-in-law with a terminal brain tumor who endured endless cycles of chemotherapy that had no effect except to weaken him.
Gawande said that the patient needs to be asked the following questions to know his/her innermost wishes:
- What are his/her biggest fears and concerns?
- What goals are most important to him/her?
- What trade-offs is he/she willing to make and not willing to make?
By finding out one's answers to these questions, you will be able to help the patient enjoy the life that he/she wants. And in most cases, people prefer to lead normal lives and die peacefully at home with their loved ones instead of being bed-ridden and strapped to life support machines in the hospital - even if this meant a longer life.
Gawande said that a doctor's mission is not just about ensuring health and survival.... it is to enable well-being. And well-being is about the reasons one wishes to be alive. I like that perspective and I hope doctors adopt this perspective.
People with serious illness, Gawande shared, have priorities besides simply prolonging their lives. Surveys find that their top concerns include 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.
After hearing this doctor's perspective, it makes you wonder if a patient and his/her family are able to really fully grasp all the risks that come along with a procedure. Are they able to think through the probabilities shared by the doctor? Is 10% success rate for example worth pursuing given the risks involved? Does the potential positive outcome far outweigh the potential risks? If it were successful, would the patient live way longer than the average person who didn't get any intervention?
I remember a story relayed by my mom about an aunt who was diagnosed with cervical cancer in the 1980s. She decided to get cobalt treatment which I think was the best known treatment at that time (not sure though if it was still new or considered experimental back then). Around that same time, another person in their town was also diagnosed with the same cancer but she decided not to get cobalt treatment. The cobalt treatment weakened my aunt's body and she eventually passed away within several months or maybe a year since she was diagnosed. On the other hand, the person who never got cobalt treatment got to live more than 10 years. Would my aunt have lived longer if she didn't get cobalt treatment? We'll never know.
But deciding on what to do when someone is diagnosed is really a tough decision to make. Given the rollercoaster of emotions one is in, it would be almost impossible to think clearly and objectively as the tendency is to focus on the solution that would give us hope to extend one's life - no matter how small the probabilities are.
The author himself experienced this situation when his dad, also a surgeon, was discovered to have a tumor in his spine. His dad didn't pursue an immediate operation since he was more worried about what the operation might do to him (total paralysis) than what the tumor would. He didn’t want to risk losing his ability to practice surgery for the sake of treatment of uncertain benefit.
Because of foregoing the operation, Gawande's dad was able to preserve his quality of life and achieve what he wanted (which is to practice surgery) for several more years until symptoms worsened and the pain became untolerable. When he reached that point, that was the only time he considered having an operation. At every stage of the disease, the dad, together with the rest of the family, carefully weighed the probabilities and risks of every proposed medical procedure. The family also made sure that each decision made was what the dad really wanted.
Making sure what the patient really wants is very important, Gawanda emphasized. Apparently, about 2/3 of patients undergo therapies they don’t want, but they only gave in because it was what their loved ones wanted. Gawande cited common stories of patients like a grandparent who was put on life support against his wishes, a relative with incurable liver cancer who died in the hospital on an experimental treatment, and a brother-in-law with a terminal brain tumor who endured endless cycles of chemotherapy that had no effect except to weaken him.
Gawande said that the patient needs to be asked the following questions to know his/her innermost wishes:
- What are his/her biggest fears and concerns?
- What goals are most important to him/her?
- What trade-offs is he/she willing to make and not willing to make?
By finding out one's answers to these questions, you will be able to help the patient enjoy the life that he/she wants. And in most cases, people prefer to lead normal lives and die peacefully at home with their loved ones instead of being bed-ridden and strapped to life support machines in the hospital - even if this meant a longer life.
Gawande said that a doctor's mission is not just about ensuring health and survival.... it is to enable well-being. And well-being is about the reasons one wishes to be alive. I like that perspective and I hope doctors adopt this perspective.
People with serious illness, Gawande shared, have priorities besides simply prolonging their lives. Surveys find that their top concerns include 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.
Gawande also mentioned that how we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, he said, you believe that you will live forever. When horizons are measured in decades, you do not worry about losing any of your capabilities but as your horizons contract—when you see the future ahead of you as finite and uncertain— your focus shifts to the here and now, to everyday pleasures and the people closest to you. You become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being.
Now I understand why my outlook in life is like this! Wahaha...
Another topic comprehensively covered by the book is about the elderly in the US and how they are brought to nursing homes when they could no longer perform the activities of daily living. Yes, there is actually a formal classification system for the level of function a person has. There are 2 types:
The first type is the 8 Activities of Daily Living:
1. use the toilet
2. eat
3. dress
4. bathe
5. groom
6. get out of bed
7. get out of a chair
8. walk
If you cannot do these without assistance, then you lack the capacity for basic physical independence.
The second type is the 8 Independent Activities of Daily Living:
1. shop for yourself
2. prepare your own food
3. maintain your housekeeping
4. do your laundry
5. manage your medications
6. make phone calls
7. travel on your own
8. handle your finances
If you cannot do the activities above, then you lack the capacity to live safely on your own.
So if one lacks the capacity for basic physical independence and to live safely on his/her own, they bring the elderly to nursing homes, or retirement communities, or hospice, or resort to assisted living (there are actually several options now depending on what suits the elderly's needs and wants).
Of course, for most of us Filipinos, this set up is still unthinkable since we take care of our elderly at home. In the US, resorting to nursing homes wasn't also always the case. Like us, they used to take care of their elderly at home too. As proof, in the mid-19th century, poet Emily Dickinson and her younger sister stayed with their parents in their parental home until they died.
So what happened? How did it evolve?
Gawande cites several reasons. Here are some -
- In the past, it was rare for people to reach old age. If they do, they were the go to resources for knowledge and wisdom. (Remember how we used to ask our grandparents, parents, aunts and uncles about history, and why and how questions?) But with technology and the internet, this has eroded. Now, one could easily search for answers online.
- Since human life span became longer due to technological advancements in medicine, this made parents and children live together longer at home, causing tension. Living under the same roof resulted to struggle for control — over property, finances, and even the most basic decisions on how to live.
- According to historians, the elderly of the industrial era did not suffer economically and were not unhappy when their children left them on their own. As children left home for opportunities elsewhere, the parents discovered that they could rent or even sell their land instead of handing it down. Rising incomes and the pension system enabled them to accumulate savings and properties, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability.
In gist, Gawande pointed out that the shift in behavior mutually benefitted both the old and young. It gave both of them more independence and control. But the problem arises when the independence for the elderly becomes impossible. :(
He further shared that we are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so. At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life.
In the case of Gawande's dad, he told the family how he wanted the end of his story to be written. He wanted no ventilators and no suffering. He wanted to remain home and with the people he loved - and that was how they let him be.
Lastly, here are some insightful words from Gawande about mortality -
Death is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.
I think the book is a good read for those with loved ones undergoing health problems, those who care for the elderly, those who are curious about what happens in old age, or simply, those who want to reflect about mortality. :)
