The Way To Go

The way to go, July 28, 2010.

When my 79-year-old mother died peacefully in St Vincent's Hospice, we were thankful we were there with her. At home until just a few days before, she remained in control as much as anyone dying from cancer can. In the hospice, the morphine made the last few days bearable, and killed her. This is what ethicists call "double effect"; the intention is good but it has a foreseeable bad outcome.

Hospices help people die with dignity. My mother was lucky she was not in hospital — they are not designed to help people die but to keep them alive.

The earliest hospitals treated injured soldiers in Roman times. Perhaps this is why we like military metaphors in health so much. We fight diseases and lose the battles against them when we die. Until recently — the past 50 years — most people died in the company of family, friends, priests or faith healers. Today, if we die in hospital, we are more likely to die alone or in the company of strangers.

In the 19th century people were expected to live for half as long as they are now. Most families would mourn the death of at least one child, sometimes more. Medical advances and a better standard of living mean we are no longer reminded of death each day.

Hospitals with advanced technology and medical specialisation still fight diseases and often win. But there is one fight they cannot win: death.

Hospitals are filled with elderly patients at the end of their lives. People over 65 make up an eighth of the population, but they comprised about 37 per cent of patients in public hospitals last year.

Doctors always include age in an oral summary of a patient, and other factors are also important — such as lifestyle, psychosocial factors and a capacity for relationships. Some people in their 70s are fitter and healthier than those in their 50s.

WISDOM OF THE AGED

I was at a public lecture last month when a 95-year-old woman spoke wise words. She was as sharp as a tack. If she got sick she should have all the medical care needed to get her well, but only if she understood the risks and was able to state a preference. It is capacity to enjoy life and make decisions that counts.

Because hospitals are designed to treat and save patients, healthcare professionals follow protocols designed to maintain and sustain life, often without considering the patient's circumstances. Sanctity of life underpins the ethic of hospitals. They use expensive and often invasive treatment when basic, humane medical and nursing care is more appropriate.

The full range of interventions are given to patients admitted to intensive care units. Expensive imaging technologies, such as MRI machines, can cost from $1 million to $3 million each, and cost between $500 and $3500 per person per scan.

Whether a patient wants any of this is frequently unknown. Patients may be unconscious when admitted or suddenly deteriorate. The miracles of medicine allow life to be maintained even in the frailest humans. Many die during treatment, and the lucky ones have palliative care for their remaining days. Many who recover are incapable of interacting with others, and unable to say what they would like to happen. They are incapable of enjoying life or relationships. Is this how we want to die?

Although affordability is a major consideration, my arguments for limiting treatments for the elderly at the end of their lives are based on the potential for harm from those treatments and avoiding unnecessary suffering — be it for weeks, days or hours.

If an elderly patient's heart or lungs stop working, they usually will be given cardiopulmonary resuscitation by an "arrest team" regardless of how likely they are to survive. This is the default treatment. Only patients who have expressed a preference and had it documented in the medical records do not get it.

Many doctors and nurses, critical on ethical grounds of the requirement to revive elderly patients, will go through the motions with CPR. Others give it their best and keep the patient alive, only to later wonder if they did the right thing.

EXTENDING LIFE

The fallback position of extending life seems to be self-evidently proper, but is, in fact, tragic. Until the mid-1990s, patients in New South Wales had red or blue codes inserted into their records to show whether or not they were to be resuscitated. Often, neither those patients nor their relatives knew which colour applied to them. They did not know doctors had already decided not to resuscitate. Instead, such information should be shared sensitively with patients and carers — a necessity for both them and clinicians.

Confusion about policy concerning treating the elderly in hospitals means many terminal patients are kept alive unnaturally and suffer unnecessarily. It allows the personal biases of doctors to dictate treatment. Some doctors may act on their own moral and religious convictions and try to save every life. Others will not offer treatments when they should, on the basis of the patient's age alone.

Why are we reluctant to talk about caring for the dying? Some patients worry that if they refuse high-tech treatment, they will be left without any care. Some doctors see little that is heroic in caring for the dying — their skills lie, and are better used, elsewhere. Patients need a warm hand and comfort rather than a surgeon's scalpel.

Notwithstanding the clinical complexities of treating the elderly, surely the goal of treatment is to relieve pain and reduce symptoms while not overtreating or causing undue suffering by prolonging life.

Palliative care clinicians should be discussing the options with patients and carers to determine which is best for them. Sadly, they are often called only after more invasive treatments have inevitably failed — perhaps because palliative care is not well understood by the community. In 2006, for instance, a government report, Community Attitudes Towards Palliative Care, found it was raised by just 1 per cent as a health issue. While hospices are the alternative to hospitals, palliative care is the alternative to life-saving treatments. A palliative approach treats the whole person by attending to their quality of life, not just to treating the disease.

Yet it was not specifically mentioned in the health and ageing budget statements for this financial year. The government did allocate $500 million for more subacute care services, which enable many older people to leave hospital earlier and free up beds. But we need to keep them out of hospital in the first place.

Hospitals can be dangerous for the frail elderly, where they are at risk of overtreatment, infection and adverse events. If a family member wants "everything done", doctors are likely to agree — the fear of litigation ensures that. Doctors respond to family demands even when the patient will suffer.

THE COST OF CARE

Yet the costs of treating the elderly in hospital are enormous. This year, $64 billion was allocated to public hospitals and reducing pressure on emergency departments. A disproportionate amount of this money is spent on us in our last few months of life, money that could be better spent on patients who will benefit and on health prevention.

Nationally one bed costs about $1420 a day, with the average cost of an admission in selected Victorian hospitals about $4380, a little less than the national average cost for each admission to a public hospital of about $4500. Older patients generally stay longer than younger ones — 7.3 days compared with 4.5 days for the rest. Patients over 75 stay the longest of all of us, except for babies under one.

Most elderly patients are hospitalised for circulation problems, then cancers and tumours. Coronary heart disease and stroke account for 30 per cent of deaths of those over 65. Surgery and general anaesthetic are too much for some — they may not recover. About 10 per cent of aged patients are transferred from hospital to a residential care facility, including those who were admitted with only a broken bone.

Where should the elderly go when dying if not to hospital? If a person cannot die at home, the next best place is a hospice.

We arranged my mother's admission to the hospice when she had difficulty breathing and strong pain, but there are too few hospices. Of the 78,000 elderly people in nursing homes, a significant number are transferred to hospital for symptoms similar to those experienced by my mother. Yet the average cost of an aged care bed is about $100 a day — less than a 10th of the cost of a hospital bed. And the cost of a hospice bed is significantly less than a hospital bed. Keeping the dying out of hospital is also better for family, friends and the patient. It's much easier to have meaningful conversations in a hospice.

In the last half-century, we have handed over responsibility for dying to doctors and incurred the costs. Accepting death as natural is necessary for imposing limits on treatment. We need more, and more open, discussion on how we die and how we care for those approaching death. And on whether the goal of medical treatment for the dying is to relieve suffering or extend life.

This dilemma is not one of medicine's making; it is a conceptual one about how we use medicine on the inevitable journey to death.

By Merrilyn Walton, in The Sydney Morning Herald