Sick To Death > Chapter 3 > Perspective - In Britain, Progress in Care for the Last Part of Life

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Perspective - In Britain, Progress in Care for the Last Part of Life

Joanne Lynn

When considering a set of issues like care for the last part of life, one reasonably assumes that other countries have important insights and working programs that might guide and inspire reform activities in the United States. After all, every demographically similar nation faces roughly the same challenges - long-term illness at the end of life, projected growth of the affected population, and social arrangements that reflect an earlier era dominated byacute illnesses. Indeed, many innovations and advances are in evidence. Hospice programs are available around the world (, Canada has promulgated a substantial set of standards and has designated specific funds for end-of-life care, and the World Health Organization (2004) has issued guidance for palliative care.

As one might expect, since the modern movement for palliative care started there with the work of Cicely Saunders (Saunders and Clark 2002), Britain often leads the way in implementing better care for the last phase of life. A major difference in the British approach to reform, as compared to that in the United States, is that the care system has authorities that can shape its evolution. Each area has its Strategic Health Authority, Hospital Trust, Primary Care Trust, facilities, staff, and governing leadership. When these authorities are most concerned with defending the status quo, theycan block innovation. But when they are forward-looking and invested in improvement, they can create engines of reform quickly. At present, the tenor of such efforts seems to be looking to improve care toward the end of life, sponsoring widespread innovation, measurement of accomplishments, and investment in better ways to organize care.

Britain has a reinvention project for its National Health Service (NHS) generally, and that modernization agenda has included end-of-life care from the start. Led by Dr. Keri Thomas, the British Gold Standards Framework has engaged more than one tenth of the General Practitioners in activities that demonstrably improve care, including having a registry of persons sick enough to die, ensuring that these patients and families have adequate support at home after office hours, documenting where each person wants to be when near death, and trying to effectuate that wish (keri [email protected]; The British National Institute for Clinical Excellence is responsible for documenting guidelines to achieve high quality, and guidelines for palliative care are in place alongside those for many other aspects of health care (National Institute for Clinical Excellence 2003; Over time, these will be part of the regulatory reviews and the bonus payments for high performance. The guidelines specifically endorse the Gold Standards Framework and also the Liverpool Care Pathway (, a checklist of issues to address in order to ensure reliable support near the end of life (Macmillan Cancer Relief 2004).

Britain has also developed extensive and reasonably comprehensive care arrangements, including in-patient hospice services, able to serve virtually every community. Those hospice programs have become major providers of expertise to hospitals and other providers. Britain has established a specialty in palliative medicine, requiring certified training in order to practice as a palliative-care physician. Each geographic area has a District Nurse home-care service and a Macmillan cancer home-care nursing service, and these programs have undertaken additional training for many of these nurses.

Increasingly, the British health-care system believes that moving patients into the hospital near death serves neither the patients nor the care system well. More than half of all deaths in Britain take place in a hospital. Part of the Gold Standards Framework requires documenting the patient's preferred place of care at the end of life and following that preference whenever possible. More District Nurses and General Practitioners are able to support family caregiving at home, and family caregivers usually qualify for a stipend from the government. In addition, enhancing nursing-home capabilities for adequate care has become a priority.

Continuity across care settings and time has been a challenge and will be even more complicated when the new contract with General Practitioners takes effect in 2004, since the new contract eliminates any requirement to take after-hours calls. The Primary Care Trusts that manage primary care will need to devise ways to ensure that after-hours on-call teams know each patient's situation and are able to respond to the home if needed. Electronic medical records, which are beginning to be widely implemented, will help with this challenge. In part because care is often compartmentalized in a series of settings and in part because the care system is less driven by legal considerations, advance care planning has not been as substantial a focus in Britain as it has in the United States. The growing requirement to know the preferred place of care may well spur a broader consideration of preferences and options.