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Into the goodnight

It is critical for older people, especially those who can afford special options, to think of how they intend to spend their final days and specify, along with their will and estate plan, their preferred dispensation about the last phase of their life.

Manish Nandy | New Delhi |

The average Indian now lives 67 years, according to the health ministry’s statistics, women slightly more. So, if you have reached your sixties, you better read what follows. If you have crossed into the seventies or beyond, you better read and act quickly. If you don’t decide now, somebody else will soon take decisions about you that you may not like much. For most of human history, the end of life has come quickly for most people. Men and women lived and then died suddenly from a disease or an accident, unless they were cut short earlier by a crime or conflict.

As science improved, people not only started living long, the end of life became a long-drawn affair. Doctors knew far better to revive you from even a serious accident and to keep you alive for a long period even though you had diseases and health problems. The terminal phase of your life now may be a long period ~ perhaps very long. That is the period we don’t like to think about, for it is distasteful to contemplate a time when you are feeble, don’t see or hear well, walk unsteadily, and are relatively detached from the things and people you care about. But that period is coming, and, who knows, it may be a long period for you. When people live long and live so in an enfeebled condition, they need help.

If you are Bill Gates or Jeff Bezos, you can live like another American millionaire, Howard Hughes, lived: in a plush hotel, surrounded by your own valet, chef, doctor and nurse. Most of us can’t afford that. Many of us have the illusion that we will then have the kind of help that surrounded our fathers or grandfathers. We imagine being helped by our children. They may not even be in the same city or country as you. They are likely to be working people, with children and worries of their own, and little time left for you. You will probably be an unwelcome burden for them, with your special and growing needs and extravagant expectations. Face the fact: as late as the mid-twentieth century the vast majority of people died in their homes, among their sons and daughters; now, in most advanced countries, the vast majority die in a hospital, presided over by their doctors and nurses.

You will not have, in your final moments, the loving attendance of people you care for and who in turn care for you; you will have the impersonal presence of medical staff, who will be calculating whether you need another shot or the ventilator. But long before that end point, if you are felled by infirmity, a fall and fracture, an organ failure or a disease like Parkinson’s, Lou Gehrig’s or cancer, your life will be taken over by doctors and specialists, with scant concern for the quality of your life ~ they are neither trained nor equipped to cope with your concern for still living a meaningful life ~ and you will find yourself a slave to mechanised routines of feeding, cleaning, treating and staring vacantly into space and an overwhelming routine of medicines and medical procedures.

What is the alternative? Think, learn, talk, plan. Don’t shun thinking of the end days because it is an unpleasant prospect. It is important to face the future realistically instead of depending on the uncertain generosity of children and equally uncertain thoughtfulness of doctors. It is just as important to gather information well in advance, about medical and non-medical assistance available in one’s locality, to ask questions of people who might have such information, public and private agencies that provide services. And then to plan ahead for the time one will need help. In our time remarkable advances have been made in computer science and biotechnology, and the result has been spectacular progress in medical science.

But knowledge is one thing and its use is another. The overwhelming focus of medical practice is on fighting illness and diseases. Much of the practice, for practical reasons, targets people of advanced age. It is a far cry from dealing with diseases to ensuring the health of people. Few doctors have the time or the inclination to focus on health and advise their patients extensively on what they should do to be and remain healthy. But is keeping a person healthy all that the medical profession should do? Surely a person’s well-being is more than just warding off diseases and keeping the body in working order. Well-being is more than feeling free of pain and feeling fit. It is being able to feel well, by doing what one can still do, what gives one pleasure, what gives meaning to one’s life. In earlier times, when physicians had fewer resources and a narrower knowledge bank to rely on, the good ones were still able to instill that well-being by talking with their patients and caring to ascertain their priorities.

With far better resources and even with significant skill, many physicians today are moving further and further away from helping their patients achieve such well-being. No less than a famous surgeon and superb writer, Atul Gawande, writes, “Whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric.” Many doctors have no understanding and no interest in those larger aims. They will be shocked to know that many of their patients often think their conduct ‘barbaric.’ This is far more likely to be the case in the final stage of life when the options are more limited, a person’s flexibility, strength and mobility are all impaired, he and she cannot see well or hear well, and needs all the help they can get, even for daily chores.

They will eagerly seek not just the best medical counsel, but guidance in sorting out such counsel ~ out of the plethora of chemical names of medicines and Latin names of infirmities ~ for their individual cases. Experience suggests that they will be often disappointed. Out of such disappointment has arisen the specialty of geriatric specialists. It is not a popular specialisation yet, but with a growing size of the gray population in most countries it may gain importance with the years. The hope is that other practitioners also, especially general and family practitioners, will learn better how to cope with the special issues of the elderly. The other emerging field is that of palliative care. Often pain, as in certain types of cancer, cannot be eliminated; it can only be mitigated or managed.

Certain disabilities cannot be cured; there can only be workarounds or alternative arrangements, with or without others’ help. Effective palliative care is still available only in particular locations, but again the hope is that its broad principles and practices will gradually get absorbed in other sections of medical practice. The elderly feel so utterly helpless and constrained in hospitals and nursing homes that a new trend is now pronounced in the US and other advanced countries. They want to remain in their own homes and ask for hospice care. They remain in a familiar, favourite surrounding, in closer link with relations and friends, under the watchful supervision of hospice specialists, who may make or ask for some adjustments in the home for safety or mobility. There is a clear upswing in older people who want to spend their last days in their own bed, with the people they know best.

The hospice movement, which has barely started in India, is expected to soon gather momentum because of a huge pending demand. The problems of older people in their last days are often aggravated by dwindling financial resources and escalating care expenses, not the least because of mediocre money management even in relatively affluent countries. In poorer lands, the problem is acute. As people live longer in the penumbral period when they need others’ help, it is important that they explore the alternatives well in advance, consult both their doctors and other knowledgeable people, and know what options may be available to them. Many may not want to be kept alive by strenuous measures that gain them a few days or weeks of life both at great expense and great discomfort.

Sheer longevity, which is often the doctors’ instinctive preference and to which a dutiful daughter or mournful spouse will unthinkingly capitulate, may not be the terminal patient’s real wish. It is critical for older people, especially those who can afford special options, to think of how they intend to spend their final days and specify, along with their will and estate plan, their preferred dispensation about the last phase of their life. That may be the better way to go gentle into the good night, instead of raging, raging against the dying of the light.

(The writer is a Washington-based international development adviser and had worked with the World Bank. He can be reached at [email protected])