Sunday, February 1, 2015

Being Mortal: Medicine and What Matters in the End– Dr Atul Gawande

GUEST POST by N.R.Ramesh

For those who are not familiar with Atul Gawande, a short introduction is probably in order. He is a surgeon, lives and works in the US at Brigham and Women’s Hospital, and has been writing quite extensively. He is a staff writer for the ‘The New Yorker’ magazine, and has published three books earlier, ‘Complications’, ‘Better’ and ‘The Checklist Manifesto’. These books deal with the challenges of practicing medicine, starting from the dilemmas doctors face when they have to treat with incomplete information to running hospitals better and how to make the medical practice safer.

In this book, Dr. Gawande has taken a critical look at how modern society is dealing with the end of life care. He starts by emphasizing that our bodies eventually start failing and the end eventually happens due to the cumulative effects of all the changes due to ageing, starting with cellular degeneration to structural changes to our anatomy. Next he traces a little bit of history of how end of life care has changed from what were called the ‘poor houses’ in the US to the modern day ‘nursing homes’. He also explores the differences between different societies and finds that as the overall economic situation improves, most societies around the globe follow a similar path in terms of dealing with the evening of one’s life.

He vividly describes how the current average nursing home or assisted living communities in the US, and probably in most other developed economies are more designed to be places where one is kept “safe”, and “medically alive” at the cost of everything else that may matter for the resident. He has interviewed several residents, care givers, geriatricians and finds that the routine in such homes are designed for the overall efficiency of the staff and care givers and do not have any flexibility that the residents desire. He highlights this to be one of the first things that people who move into such places miss and makes them feel that they are no longer in their “homes”. The regulations that govern such communities are also only focused on the physical safety of the residents and hardly anything else. Regulations have certainly helped to improve the general hygiene and comfort levels from the days of the “poor houses”, but have not addressed the wholesome needs of the residents. He also gives a good account of hospice care which is getting popular under which one is able to maintain a decent quality of life staying in their own homes.

Dr. Gawande has also interviewed and visited some of the communities that have been trying to fix this issue and have tried to make the residents lives more meaningful. He talks about the community that tried to collocate close to a school with kids visiting them during their breaks or where the residents can watch the kids play, and another one where they tried bringing in pets like birds to keep the residents engaged. It seems that having something meaningful to do, however little it may be due to one’s physical limitations does a world of good to the resident’s mental state and it rubs off into their physical well-being as well.

He then talks about the difficult choices one has to make when faced with terminal illnesses. He illustrates this with a few patients he has followed, primarily those facing terminal cancers and the difficult choices one has to make with respect to the treatment regimens, especially when the outcomes predicted are not very rosy. Quality of life seems to be taking a big hit for some who opt for these treatment regimens and the last few weeks of their life is spent secluded in an Intensive Care Unit, away from their family and friends, and often with multiple tubes into their bodies to keep them “alive”. He suggests that when we know the end is inevitable and fairly close, it may be worth considering what is really important for the individual and allow them to make those choices. He also feels that the medical community, especially Doctors need to be better trained to have these conversations when the person is fully conscious and aware, and help them make the right choices. One of the persons described is his own father who is diagnosed with cancer and how he chose to decline some treatment options towards the end, and decided to stay at home with hospice care.

Overall, a very good book that really takes a critical view of the current state of affairs for those in the evening of their lives, and he has dealt with this subject as candidly as possible. The core message of the book, if I have to sum it up in a single line is that the individual should have a say in how they want to spend their last living days and the medical community and family need to try and make that possible as best as we can.


Mohanakrishnan said...

NRR and Madhu,

Thanks for the post. It is kind if depressing narrative of a very real issue.
I think there is a moral contradiction in this whole thing. If we are keeping the old alive as long as possible at any cost for the sake of others, then they should be kept in their society and not in an old age home.

If we are doing it to protect the right of the individual to live, then we should just let them do what makes them happy - as that is their right too.

As long as we don't discover the fact that they are 'useful' to the world, the aged will have to undergo this undignified life, I think.

பகலவன் கிருஷ்ணமூர்த்தி said...

Thanks for the review Ramesh. FYI, there is a legal document (called "Trust") here in US in which an individual can make a choice ahead of time, in case of eventualities. That does not address all cases, I agree. The term "quality of life" is subjective for individuals. My take is that eventually, laws will evolve around this core issue as the longevity gets increased going forward.

balaji rengabashyam said...

Nice topic Madhu; I know and have also heard about many elderly people who avoid meeting others (other than their caretakers) when they are unwell and feel in-presentable. They value their dignified life so much and prefer to die with dignity rather than being treated in Hospitals like a malfunctioning Robot at its Service yard. I personally support the view of the Right to Decide one's Life or Death becoming legal.
Best Regards,