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How to Establish a Palliative Care Program

Evolution in The United Kingdom

In the United Kingdom and Ireland, free-standing inpatient units for the care of the dying developed first. These were developed for patients (predominately with cancer) with difficult symptom and psychosocial problems that could not be met elsewhere in the health care system. Further, these patients were at a stage where treatments directed at the cancer were no longer efficacious. Patients admitted usually had a prognosis of weeks to months.

The National Health Service in the United Kingdom and in Ireland is a comprehensive system that provides hospital, nursing home, and home care services that includes home visits by doctors and nurses. Hospice developed to supplement this system.

Two things became clear fairly quickly. First, many patients wanted to be able to be cared for at home, and to die at home. To augment the existing home care services, hospices developed home care support teams to consult and assist the general practitioner and district nurses. Second, consultation through office-based and hospital-based consultation teams was needed to bring the expertise developed in the inpatient hospices to patients and families in other settings.

In response to the cost of the original inpatient hospices, and the demand for their use, average length-of-stay has declined. While they developed as a place where the dying could live for the rest of their lives, they have evolved into specialized inpatient facilities for the management of difficult problems. Once those problems have come under control, there is pressure to move the patient to places of lower acuity (e.g. home or nursing home) if death is not imminent.

In the UK, the word hospice continues to mean an inpatient facility. It is usually free-standing and frequently located on hospital grounds. Although some are supported completely by the National Health Service (NHS), many are independent charities with contracts with the NHS to provide services. These independent hospice charities require up to 80% funding from philanthropy for their budgets.

Today in the UK, palliative care has evolved to be a generic term that describes the care delivered in hospices, outpatient clinics, home care teams, and hospital-based consultation services. It implies care delivered to those with progressive far-advanced disease with poor prognosis. Palliative medicine means the physician specialty component of the interdisciplinary team delivering palliative care.

In-hospital units and consultation teams were the last element to develop in the UK and Ireland. They are in close proximity to decision-making. They can take advantage of the resources of the hospital and can offer flexibility in treatments (e.g. chemotherapy, radiotherapy, surgery) when necessary. The unit at the Royal Marsden Cancer Hospital is an example.

Consultation teams developed without inpatient beds of their own in some hospitals, e.g. St. Thomas' Hospital and St. Bartholomew's Hospital. While the consultation team is the most flexible of approaches, issues of continuity of care and authority problems have emerged.

Evolution in:
      Canada
      The United States

The convergent evolution

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CAPCManual Attribution:  von Gunten CF, Ferris FD, Portenoy RK, Glajchen M, eds. CAPCManual: How to Establish A Palliative Care Program. New York, NY: Center to Advance Palliative Care, 2001.   © Center for Palliative Studies, San Diego Hospice & Palliative Care, San Diego, CA and
The Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, 2001

Permission to reproduce for non-commercial educational purposes with display of attribution and copyright is granted.
Last updated: February 20, 2002

Rationale
Select section:
Changing Illness Experience
Changing Expectations and Needs
Progressive Healthcare Response
Responding to the Opportunity

•  Changing Illness Experience
      Illness in the Past
      Progress Fighting Disaese
      Illness Today
         Prolonged Illness Experience
            Chronic Disease Process
               Determining Prognosis
               Cancer
            Manifestations
            Predicament
         Prolonged End-of-life Experience
            Sudden Unexpected Death
            Predictable Decline
            Slow Decline, Multiple Acute Crises
         Death in the US
            Leading Causes of Death
            Setting of Death
               Desired
               Reality
         Multiple Issues Cause Suffering
            The Square of Care
            Morbidity
               Pain
               Need for Assistance
               Social, Financial Impact
         Implications for Care
            Variable Need for Care
            Opportunities
               For Patients
               For Families
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•  Changing Expectations and Needs
      Increased Consumer Autonomy
         Picker Institute 8 Dimensions of Care
      Goals, Not Problems, Drive Care
         Shift to Goal-oriented Care
      Expect Competence, Expertise
      Expect Comprehensive Assessment
      Expect Effective Communication
      Expect Participation in Decision-making
      Expect Timely, Continous, Coordinated Care Delivery
      Expect Assistance with Caregiving
         Caregiver Training, Support
         Caregiver Financial Support
         Alternate Settings of Care
         Respite Relief
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•  Progressive Healthcare Response
      Focus on Disease-modifying Therapy
      Focus on Care of the Dying
         Early Hospice
         Modern Hospice Movement
            Dame Cicely Saunders
            Origins of "Palliative Care”
         Evolution of Hospice, Palliative Care
            In United Kingdom
            In Canada
            In United States
            Convergent Evolution
         Hospice, Palliative Care in US Today
            Hospice Growth
      Continued Unmet Opportunity
      A Public Health Issue
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•  Responding to the Opportunity
      Paradigm Shift in Thinking
      Provide Concurrent Care
      Consider Application to Those at Risk
      Expand Services, Settings of Care
      1º, 2º, 3º Model of Delivery
      Expand Access to Expertise
      Create Specialized Environments
      Many Names, Same Focus of Care
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