Caring for dying the biggest challenge facing the NHS, which can learn from the US, say Richard Smith and colleagues

About 60 per cent of people die in hospital when less than 20 per cent would choose to. Heartbreaking stories of bad deaths are common, and each day people die on hospital trolleys or on general wards. Almost half of complaints to the Healthcare Commission relate to end-of-life care.

Improving care at the end of life is the greatest challenge we face as a healthcare system, and we may be able to learn from the US experience.

The US hospice movement began in 1963 following a visit from Dame Cicely Saunders, who had founded the modern hospice movement in Britain. The US system is more centred on the home than in Britain, providing medical, nursing, emotional, and spiritual support as well as focusing on patient choice and family involvement. It also covers all patients dying, not just those dying of cancer.

In the 1980s, three initiatives helped spur the growth of hospices in the US:

  • First, hospital funding had meant that they tended to lose money from patients dying in hospital (payment by results may have a similar impact here), so a change was necessary.
  • Second, the arrival of managed care led to tighter focus on cost, quality, and patient choice.
  • Third, the federal government believed an expansion of hospice care could bring improvements in quality of care and a reduction in costs.

In 1982, Congress created a Medicare hospice benefit, where a payment was made to providers when clinicians judged that a patient was within six months of death. The benefit pays for everything necessary for palliative care, including nursing and physician care, social services, counselling, inpatient care for respite and palliative procedures, medical appliances, drugs, physical and occupational therapies, and bereavement services for patients' families for up to 13 months after the patient's death. The patient must, however, accept that care will be palliative not curative.

In 1989, Congress increased the payment by 20 per cent and tied future increases to the annual increase in hospital payments. The number of hospices grew dramatically from 31 in 1984 to around 3,000, as did the number of patients, from 60,000 in 1989 to almost 800,000 in 2004. A quarter of Americans are now dying under hospice care provided by Medicare.

The rate of growth is greatest among the very elderly and in 2000 half of the patients were dying of diseases other than cancer, compared with only a quarter in 1992. Increasingly, as in Britain, people are dying not from cancer but from organ failure or dementia.

Diagnosing dying

The US experience shows that skills needed to care for cancer and non-cancer patients do not significantly differ. In Britain services must be specifically tailored to provide care for those with conditions other than cancer.

Importantly, the length of time that people spend in the programme has increased from 45 days in 1989 to 65 in 2004. In other words, clinicians are becoming increasingly comfortable with diagnosing dying, therefore allowing patients' last months to be more dignified. However, a quarter of patients still spend just five days in the programme.

The care is built around a detailed understanding of patients' wishes. Advance directives are reviewed with the patient to support their right to guide final healthcare decisions. The patient's primary care doctor is involved in sanctioning and supporting the hospice service. The hospice medical director helps by seeing the patient or advising on the care plan. Hospice staff make regular visits to assess the patient and provide additional care or other services. Generally the care is provided in the patient's home or in a care home. Hospice staff are on-call 24 hours a day, seven days a week.

Lessons for Britain

A 1997 study of the deaths of 3,357 US patients found that 40 per cent were in severe pain and a quarter experienced moderate to great anxiety. Few of these patients died in hospice programmes, but the deaths of all patients in hospice programmes are routinely reviewed. Hospices suffer severe sanctions, including loss of licences, if their results are poor.

The US government believes this approach not only improves the 'quality of dying', but also saves costs. A study for the Health Care Financing Administration showed that Medicare saved $1.26 for every $1 spent on hospice care.

So what might Britain learn from the US experience?

  • First, we should try to dramatically increase the number of people who have discussions about advanced care planning. This is particularly relevant now because of the requirements of the new Mental Capacity Act. Patients and their carers need to learn to think about what matters most to them before the final days of their lives. Care can never be truly patient-centred if patients have not been asked these important questions.
  • Second, we need to encourage the earlier identification of patients approaching the end of life, ideally months rather than days before death. We also need to expand the range of generalist palliative care and hospice services to increase the availability of care, and we must learn to care for patients dying of conditions other than cancer.

All these issues are included in the recommended end-of-life care programme, which has seen early successes in improving patient care and cost effectiveness by reducing inappropriate hospital admissions. But much more needs to be done.

The Department of Health is developing a national end of life care strategy that will incorporate these points and more. End-of-life care advisory board chair Professor Mike Richards says: 'The task is huge, but there is a real eagerness in the NHS, in hospices and in social care to raise the profile of end-of-life care. I am confident that progress can and will be made over the next few years to improve the quality of care.'

It will be for commissioners to reshape the end of life experience from a hasty, undignified death in hospital to a slower, more patient-centred and holistic death that will usually happen in the patient's home or care home.

Richard Smith is chief executive of UnitedHealth Europe. Nancy Williams is clinical director of UnitedHealth Europe. Keri Thomas is national clinical lead for palliative care and the gold standards framework programme for the NHS end-of-life care programme.

Visit the Gold Standards Framework website for more information on end-of-life care