Being Mortal

Being Mortal, Atul Gawande

Gawande has written this sobering, honest, critical and yet hopeful book “about the modern experience of mortality - about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.” 

As he says:

“Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need."

He considers the medicalisation and institutionalisation of dying, and how it comes at cross purposes to what many want in their final days and years: choice over whether to remain in your own home, freedom over what you eat & drink, how we socialise (or not) with others, and the ability to make your own decisions about care, treatment and death.

He moves through topics considering how independent we are through most of life, but things start to fall apart as bodies decay and age naturally. We become creatures who need more help, and who become more dependent on others.

He consider what he terms the failure of the nursing home experiment, noting they were never designed for the purposes to which they have been put, with the three things that plague them: boredom, loneliness, helplessness:

“Our elderly are left with a controlled and supervised existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”

Gawande uses personal stories to illustrate many of his points, including very sad situations of people over-treated with increasingly painful and pointless procedures, and given false hope, who, along with their family, were never properly prepared for their inevitable death. He contrasts this with well done hospice care. He also weaves the story of his own father’s decline and death, and the choices they had to make along the way.

“Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come - and escape a warehoused oblivion that few really want.”

He notes how hard it is for patients, family and doctors to have these hard conversations, but having them helps everyone to process the reality, and to be clear about when they want, can expect and what is possible. He suggests some of the things we should be talking about at this stage are:

• What do you want? (eg to be at home, to manage the pain, enjoy remaining days) 
• What are your biggest fears and concerns? (eg to not be able to go home, to be ventilated) 
• What goals are most important to you? (eg. being able to walk, care for yourself, eat, have autonomy over day) 
• What trade-offs are you willing to make, and which ones are you not? (this can help with risky surgery decisions, etc) 

Personally, I would have loved some consideration about how faith affects people’s view about these last days, but that was not where this book was headed.

He touches on assisted suicide, and in the end is not greatly supportive of it: “Our ultimate goal, after all, is not a good death but a good life to the very end.” As he notes, “assisted living is far harder that assisted death, but its possibilities are far greater, as well.”

I appreciated some of his final comments:

“Technological society has forgotten what scholars call the “dying role” and is important to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms …the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”

“If to be human is to be limited, then the role of caring professionals and institutions - from surgeons to nursing homes - ought to be aiding people in their struggle with those limits”.

This is an excellent, thoughtful analysis that could help many start these important conversations with those they love.