Guidelines and Suggestions for those Starting a Hospice/Palliative Care Service, 3^rd edition

Derek Doyle, OBE, MD

Table of contents

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Principles of palliative care

The principles of palliative care might simply be regarded as those of good clinical practice. A holistic approach, incorporating the whole spectrum of care –medical, nursing, psychological, social, cultural, and spiritual– is good medical practice, whatever the patient’s illness, wherever the patient is under care, whatever his/her social status, creed, culture, or education. In palliative care, it is essential.

Box 1: Content 'Palliative care – its principles and practice'

Attitudes and principles required for successful palliative care

A caring attitude

• involves sensitivity, empathy, and compassion, and demonstrates concern for the individual.
• concern for all aspects of a patient’s suffering, not just the medical, nursing, or social work problems.
• a non-judgmental approach in which personality, intellect, ethnic origin, religious belief, or any other individual factors do not prejudice the delivery of optimal care.

Consideration of individuality

• the practice of categorizing patients by their underlying disease, based on the similarity of the medical problems encountered, fails to recognize the psychosocial features and problems that make every patient a unique individual.
• these unique characteristics can greatly influence suffering and need to be considered when planning the palliative care for individual patients.

Caregiver support

• the relatives of patients with advanced disease are subject to considerable emotional and physical distress, especially if the patient is being managed at home.
• particular attention must be paid to their needs as the success or failure of palliative care may depend on the caregivers’ ability to cope.
• Palliative care, whether at home or in a hospital, often succeeds or fails depending on the care and support provided for the caring relatives.

Cultural considerations

• ethnic, racial, religious, and other cultural factors may have a profound effect on a patient’s suffering.
• cultural differences are to be respected and treatment planned in a culturally sensitive manner.

Consent

• the consent of a patient, or those to whom the responsibility is delegated, is necessary before any treatment is given or withdrawn.
• most patients want shared decision making although physicians tend to underestimate this.
• having assessed what treatment is appropriate or inappropriate, this is discussed with the patient.
• in most instances, adequately informed patients will accept the recommendations made if they have been explained in non-medical jargon.

Choice of site of care

• the patient and family need to be included in any discussion about the site of care.
• patients with a terminal illness should be managed at home whenever possible though in the developed world few do so, most dying in hospitals.

Communication

• good communication between all the health care professionals involved in a patient’s care is essential and is fundamental to many aspects of palliative care. There is strong evidence that such communications are less than optimal.
• good communication with patients and families is also essential.

Clinical context: Appropriate treatment

• all (palliative) treatment should be appropriate to the stage of the patient’s disease and the prognosis.
• over-enthusiastic investigations, inappropriate therapy and patient neglect are equally deplorable.
• Palliative care has been accused of the medicalisation of death, and care must be taken to balance technical interventions with a humanistic orientation to dying patients. This is where a team approach is essential, each member of the team being able to see different aspects of the patient’s suffering, personality, and needs.
• the prescription of appropriate treatment is particularly important in palliative care because of the unnecessary additional suffering that may be caused by inappropriately active therapy or by lack of treatment.
• when palliative care includes active therapy for the underlying disease, limits should be observed, appropriate to the patient’s condition and prognosis and expressed wishes which may be different from those of the clinicians.
• treatment known to be futile, given because "you have to do something", is unethical.
• where only symptomatic and supportive palliative measures are employed, all efforts are directed at the relief of suffering and the quality of life, and not necessarily at the prolongation of life.

Comprehensive inter-professional care

• the provision of total or comprehensive care for all aspects of a patient’s suffering requires an interdisciplinary team.

Care excellence

• palliative care should deliver the best possible medical, nursing and allied health care that is available and appropriate.

Coordinated care

• involves the effective organization of the work of the members of the inter professional team, to provide maximal support and care to the patient and family.
• care planning meetings, to which all members of the team can contribute, and at which the views of the patient and the family are presented, are essential to develop a plan of care for each individual patient.

Continuity of care

• the provision of continuous symptomatic and supportive care from the time the patient is first referred until death is basic to the aims of palliative care.
• problems most frequently arise when patients are moved from one place of care to another and ensuring continuity of all aspects of care is most important. A useful means of delivering this is the Liverpool Care Plan [See the Recommended Reading List].

Consistent medical care

• consistent medical management requires that an overall plan of care be established, and regularly reviewed, for each patient.
• this will reduce the likelihood of sudden or unexpected alterations, which can be distressing for the patient and family. It may lessen the chance of crises or medical emergencies which can frighten the patient and relatives.

Crisis prevention (see Consistent medical care)

• good palliative care involves careful planning to prevent the physical and emotional crises that occur with progressive disease.
• many of the clinical problems can be anticipated and some can be prevented by appropriate management.
• patients and their families should be forewarned of likely problems, and contingency plans made to minimize physical and emotional distress.

Continued reassessment

• is a necessity for all patients with advanced disease for whom increasing and new clinical problems are to be expected.
• this applies as much to psychosocial issues as it does to pain and other physical symptoms.

Advance Care Planning

Advance care planning is a means for patients to record their end-of-life values and preferences, including their wishes regarding future treatments (or avoidance of them).

Advance care planning involves several processes:

• informing the patient
• eliciting preferences
• identifying a surrogate decision maker to act if the patient is no longer able to make decisions about their own care.
• it involves discussions with family members, or at least with the person who is to be the surrogate decision maker.

The principle of advance care planning is not new:

• it is common for patients aware of approaching death to discuss with their carers how they wish to be treated.
• however, these wishes have not always been respected, especially:
• if the patient is urgently taken to hospital
• if there is disagreement amongst family members about what is appropriate treatment.

The 'Respecting Choices' program developed in Wisconsin is an example of advance care planning:

• employs trained personnel to facilitate the discussions and record the outcomes, which are in writing and signed, and kept in the front of the patient’s file.
• the surrogate decision maker is involved in the discussions so that they have explicit knowledge of the patient’s wishes; otherwise, they may feel burdened by the responsibility.
• there is less conflict between patients and their families if advance care planning has been discussed.

Health care provider should have the own advance care planning, then it helps with the conversation about with patients and family.

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Table of Contents

• Preface
• Abbreviations/Acronyms
• Introduction
• What is Palliative Care?
• Principles of Palliative Care
• How do you 'get started'?
• Management of the New Service
• Hospital Palliative Care Unit
• Hospital Palliative Care Team
• Free-standing Inpatient Unit/Hospice
• Home Care/Community Palliative Care Services
• Hospice/Palliative Day Care Unit
• Human Resources
• Hospice/Palliative Care Volunteers
• Orientation, Training and Education
• Communication
• Documentation
• Resources
• References