On Life at the End

“To this he must come pure, at peace, ready to depart, in unforced harmony with his fate.”
Marcus Aurelius

As my parents approach their 7th decade I’m more aware of their advancing age. The awareness came quietly, unwelcome. My Dad doesn’t do the back-to-back golf days he used to and my Mom’s knee prevents her walking too far. They’re reluctant to travel, and I live half the world away.

Athul Gawade, in this excellent book Being Mortal, offers a framework to think about advancing age and what matters in the end. A practicing physician, he explores how modern medicine steps in as our bodies being to fail, but ultimately fails to offer us a good life at the very end.

The world has changed

‘One answer is that old age itself has changed. In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history. They tended to maintain their status and authority as heads of the household until death.’

‘But age no longer has the value of rarity.’ ‘ As for the exclusive hold that elders once had on knowledge and wisdom, that, too, has eroded, thanks to technologies of communication – starting with writing itself and extending to the Internet and beyond.’ ‘Perhaps most important of all, increased longevity has brought about a shift in the relationship between the young and the old’

Independence, with a catch

‘The aged did not lose status  and control so much as share it. Modernization did not demote the elderly. It demoted the family. It gave people – the young and the old – a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elder may be gone, but not because it has been replaced by veneration of youth. Its been replaced by veneration of the independent self.’

‘There remains one problem with this way of living. Our reverence for independence takes no account of the reality of what happened in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?’

From the poorhouse to the hospital to the nursing home (which suck, apparently)

‘Prosperity has enabled even the poor to expect nursing homes with square meals, professional health services, physical therapy, and bingo. They’ve eased debility and old age for millions and made proper care and safety a norm to an extent that the inmates of poorhouses could not imagine. Yet still, most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one’s life. We need and desire something more.’

‘That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear our hospital beds – which is why have were called “nursing” homes.’

‘Old age homes didn’t develop out of a  desire to give the frail elderly better lives than they’d had in those dismal places. We didn’t look around and say to ourselves, “You know, there’s this phase of people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable.” No, instead we said, “This looks like a medical problem. Lets’ put these people in the hospital. Maybe the doctors can figure something out.” The modern nursing home developed from there, more or less by accident.’

‘This has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem.’ ‘This place where half of us will typically spend a year or more of our lives was never truly made for us.’

What is it we want then?

‘At the center of Wilson’s work was an attempt to solve a deceptively simple puzzle: what makes life worth living when we are old and frail and unable to care for ourselves?’

‘In young adulthood, people seek a life of growth and self-fulfillment, just as Maslow suggested. Growing up involves opening outward. We search out new experiences, wider social connections, and ways of putting our stamp on the world. When people reach the latter half of adulthood, however, their priorities change markedly. Most reduce the amount of time and effort they spend pursuing achievement and social networks. They narrow in. Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family ad established friends. They focus on being rather than doing and on the present more than the future.’

Safety vs choices

‘People with serious illness 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. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars.’

‘The battle of being mortal is the battle to maintain the integrity of one’s life – to avoid becoming so diminished or dissipated of subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.’

‘Medical professionals concentrate on repair of health, not sustenance of the soul. Yet – and this is the painful paradox – we have decided that they should be the ones who largely define how we live in our waning  days.’ ‘ That experiment has failed. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.’

‘Making lives meaningful in old age is new. It therefore requires more imagination and invention that making merely safe does.’

Beyond the nursing home

Guwande describes various trends that improve on the traditional nursing home model. These include assisted living, although he points out that the original concept has become diluted, and retirement communities that offer a continuum of care. The success of these places is based on factors like:

  • Private rooms oriented around a shared living area housing 10-20 people, rather than shared rooms along endless hospital corridors.
  • Allowing residents to keep pets.
  • Allowing residents to control their schedule – waking, eating, bathing – instead of nursing home staff/management setting a rigid daily routine.
  • Allowing residents to make activity choices that don’t prioritize safety – yes I might fall and break a hip going to watch a movie with friends.

Terminal illness and hospice care

‘The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now – by performing surgery, providing chemotherapy, putting you in intensive care – for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now – much as nursing hoe reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting our with family once in a while.’

Talking about end-of-life preferences

‘The explanation would seem to strain credibility, but evidence for it has grown in recent years. Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did have discussion were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. In other world, people who had substantive end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.

‘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 discussion 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.’

The difficulty of choosing

‘When our time is limited and we are uncertain about how best to serve our priorities, we are faced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.’

The dying role

‘Technological society has forgotten what scholars call the “dying role” and its importance 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. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, 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 live and then stand oblivious to the arm done.’

The value of Gawande’s book is that he educates on a difficult topic, one we don’t really discuss, and does so in a gentle, supportive and constructive way. Dwelling on this subject leaves me with sadness, but also gratitude for a set of tools I can use with my parents and siblings. And optimism for a good end on my terms, when my time comes.

Resources

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