Quarterly Essay 58 Blood Year: Terror and the Islamic State (19 page)

We need more doctors like Karen Hitchcock, doctors who are committed and compassionate and prepared to take on the world for the sake of their patients, who are courageous enough to raise their voices against the fashionable dogmas of protocol-driven efficiency and cruelly balanced budgets. We need doctors who are prepared to take her message to heart and to reinstate at the centre of medicine the values of caring on which it has always depended.

Paul A. Komesaroff

We begin to die as soon as we are born, and the end is linked to the beginning.

– Bret Harte

Modern medical science compartmentalises the body, carving people up like cows in a butcher’s shop. Problems with your bones get you sent straight to an orthopaedic surgeon, brain disorders have patients trotting off to see a neurologist, and liver disease buys you a ticket to the waiting room of some slick hepatologist. In the same way, we tend to carve up life: infants are put into creche, toddlers packed off to kindergarten, kids to school and adults to work. But what about the elderly, asks Karen Hitchcock – where is their place in society? What she discovers is that the answer in the main is “Who cares?”

Hitchcock’s intelligent and challenging essay tackles our ingrained ageist attitudes head-on. Her premise is that contemporary society, on the whole, fails to treat its senior citizens with due dignity and respect. Yet our attitudes to the elderly are only a part of the conversation that we need to be having. To me, there is bitter irony in the fact that when we examine the fate of the elderly in isolation from our collective life-cycle, we fail to address the core issue: our contemporary inability to discuss death openly. We have edited Death right out of the manuscript of our lives.

Do we have a problem because people are living longer, or is our increased longevity making us uncomfortable because those on the threshold of the abyss remind us of our collective fate? The old are merely the final chapter of an ancient narrative we don’t want to listen to anymore – but the fact is that death is an inexorable part of life.

As a family physician, I have the “life and death” conversation every day, with people of all ages, reminding them that, as Joan Didion says, “Life changes in the instant.” It’s a huge bullshit-cutting factor and most people appreciate the reminder. Hitchcock works as a specialist in a large, inner-city hospital. Due to the way the system is structured, she sees a skewed population: people at their very worst, brought in by either massive crisis or slow rot. Her vignettes are poignant, but this is a tiny slice of a patient’s life, which does not include the crucial grassroots roles that community nurses, GPs, allied health practitioners, families and the broader community have to play in the continuity of care for the elderly.

If we are to take a more holistic approach to medicine, we need to see the patient as a complex organism, in which body and mind form an integrated homeostatic system. So, too, when we come to talk about life and ageing, we must talk about death. In fact, it is impossible to have any meaningful discussion about the elderly in our society if we do not examine our attitudes to mortality. And the medical profession should be first in line. Doctors are so focused on saving and maintaining lives that death has become the enemy. The militant stance we take in our ‘fight’ against heart disease or our ‘battle’ with cancer, leads to the notion that allowing patients to die of natural causes is somehow the ultimate failure.

Attitudes to old folk are a symptom of a far broader issue – that of death denial. This is reflected not only in how we live our lives, but also in debates over climate change and the way we deny that resources are limited on our dying planet.

What to do? Death could do with some rebranding. And if Paul Benner has anything to do with it, this is just “another design challenge.” As chief creative officer at a global design firm, he has one simple goal: “I don’t want death to be such a downer.” The past few years have also seen the mushrooming of Death Salons, Death Cafés and Funeral Celebrations. It seems the Grim Reaper is Gen Y’s new bestie, and death is becoming the new black; the only problem is, the elderly themselves don’t seem to have received an invitation to the party.

Leah Kaminsky

Karen Hitchcock is a powerful advocate for the transformation of the Australian health system. Most of us are aware of the much-cited 2015 Intergenerational Report, which documented the unsustainability of our public and private health systems by projecting the rising funding requirements of new technology and treatments, as well as the needs of our ageing population. In his foreword to the report, the Federal Treasurer noted, “With a growing population that will live longer, the Intergenerational Report shows the growth in the costs of many services, especially in health, that will put pressure on the budget and threaten the sustainability of those services.”

In recent weeks, the Australian Medical Association has warned of a potential “perfect storm” in Australia’s public hospital system, with the states and territories facing a huge black hole in public hospital funding after a succession of Commonwealth cuts, resulting in hospitals and their staff being placed under enormous stress, and patients being forced to wait longer for their care.

In response to this AMA snapshot, Minister for Health Sussan Ley said she was committed to working with state and territory governments to deliver a more efficient hospital system: “Let’s get the best bang for our dollar, wherever it goes. Unsustainable health spending will cause Australians more harm than good in the long run. These decisions are never easy or popular.”

Conversations on health reform often focus on providing system-wide coordinated care, especially for high utilisers with chronic disease, to keep people out of hospital. As a general practitioner and advocate for patient-centred care, preventive health strategies and strong primary health care, I have been involved in such discussions with government for over thirty years. I am well aware of the statistics that show most health-care dollars are spent in the last year of life, especially in the last thirty days of someone’s life in hospital, as they are frequently cited as evidence of inappropriate medical treatment. Like Hitchcock, I recognise two related narratives that are usually unspoken, but which frequently underpin conversations about aged care in hospital settings: “The first is that medicine is keeping elderly patients alive against their will – medicine is denying a death that the patient desires. The second is that elderly patients are seeking to stay alive unreasonably – the patient (or their family) is denying an unavoidable death.”

Clearly, ageism or any other form of discrimination has no place in medicine or in our community. So we must examine whether hospital funding cuts inadvertently result in detrimental outcomes for certain groups of patients. For example, “medical treatment futility” is a difficult ethical dilemma that has been described by some cynics as a smoke-screen to hide rationing of end-of-life care. The decision of what constitutes futile care for an individual patient is even more difficult when patients, families, clinicians and ethical committees disagree with each other. At the coalface of clinical care, the focus should obviously be on a high standard of care that is in the best interests of the patient; care is never futile, but medical treatments sometimes are.

For all these reasons, Advance Care Planning Australia advocates that everyone over the age of eighteen consider discussing an advanced care plan with their doctor to prevent inappropriate end-of-life decisions. Such a plan may be reviewed, changed or revoked, but this is a difficult process in hospital wards that are “overstretched, underfunded and caring for too many patients with a skeleton staff.” As Hitchcock concludes: “All we can hope for is that people with an advanced illness have ongoing discussions with that doctor or family or enduring power of attorney about their changing goals and values, so that these may be taken into account when treatment decisions arise.”

Currently about half the patients in an acute hospital are over the age sixty-five. In response, a number of frameworks and models have been recommended, including acute care of the elderly units and general medical wards for every hospital, as these generalist environments have been shown to result in better, more patient-focused outcomes. However, the level of investment in these evidence-based models across the country varies, largely due to the dominant view that hospital is “no place for the elderly.”

All governments and their health bureaucracies must take note of the groundswell of community support for the solutions put forward by Hitchcock. Through the voices of her elderly patients, Hitchcock has built a strong case for health-system transformation. Better care, not less care.

Unfortunately the present federal government has cut millions of dollars of funding from hospital budgets. Sussan Ley has now said she will consult with the medical profession to identify patient over-servicing, duplication, inefficiency and other forms of “waste” and inappropriate medical practice, with a focus on shifting expensive inpatient hospital care to the outpatient setting. In this consultation between government and the medical profession, the questions raised by Hitchcock in her essay must also be addressed, to ensure there is no unintended rationing of hospital and out-of-hospital services for our most vulnerable patients.

Dear Life
is not a comfortable read. Many people may feel challenged by matters to do with end-of-life care that are easier left unspoken. But the essay concerns all of us and as Hitchcock says, “it’s confronting and terrifying to see one’s own future up close like this.”

Leanne Rowe

In her pertinent and superbly crafted essay, Karen Hitchcock writes: “In my experience, most families and patients do not want to go home once dying begins. If they do, the services are terribly sparse.”

My experience has been different. Twenty-seven years of caring for the dying, in acute public or private hospital, hospice, aged-care institution or at home, has left me in no doubt that, when it can be managed, home is the best place in which to die, and is commonly appreciated as such by many patients and families. True, services to support a home death may be sparse, but it is important not to overestimate what a home death requires, nor to underestimate what can be achieved with quite modest intervention.

Walking the wards of major hospitals as a palliative care specialist, I met practitioners of other specialties and was invited to join in decisions about ceasing active treatment. This is often a difficult time for both specialist and patient; through expert care, things had been going well – with relief of discomfort, regression of disease and hope of a cure or a lasting remission – but now there is disappointment and, for the patient, a feeling of despair. My task is to explore, with patient and family, options for the time ahead, one of which may be home care.

That requires, first and foremost, the presence of a competent and willing family member (“informal carer” is the current jargon), as well as readily available skilled assistance and advice, delivered by telephone and in person.

This assistance and advice is best provided by a palliative care nurse calling daily to assist the informal carer with necessary hygiene, such as a wash in bed, and to review nursing routine and medications. The nurse can arrange equipment for home care, such as a walking frame, hospital bed, shower chair or commode. A doctor familiar with the home scene – a family GP or a palliative care physician like myself – will order the necessary medications, setting a range for each prescription within which the nurse or family can adjust doses, including any delivered by continuous subcutaneous infusion. Further advice is available by phone at all times, and a medical home visit can be made if necessary.

Palliative care is often portrayed as teamwork, and palliative care units have been commended for the comprehensive range of skills they offer to patients and families facing a terminal illness. If the responsibility for home care falls on a single family member, a frail spouse, more assistance will be needed. Sometimes a son or daughter can come for a time (even from interstate), or there is opportunity to buy help. Some charities and agencies have provision for night support to allow the family carer a regular full night’s rest. Private nurse agencies can offer flexible shifts of up to twenty-four hours per day; this can cost as much as several thousand dollars a week, but the time of dying may be only days or a couple of weeks, and a supportive family may find the means.

A well-managed home death is a powerful experience, one for which families consistently express great satisfaction and thanks. And that experience makes an important contribution to the euthanasia debate. As a former health minister, Tanya Plibersek, recently stated, commenting on the death of her father: “For the majority of people, if you get pain relief right and support them to stay in their own home, they won’t choose voluntary euthanasia.”

Before the time of dying, there is commonly a long period of care. According to 2015 statistics from the Australian Institute of Health and Welfare, half of our aged population have begun to access some form of health care four years before death. Dementia is now listed as the second-most common diagnosis leading to death, and is sometimes likened to dying by degrees over a period of years.