Key Concepts in Palliative Care

Moyra A Baldwin, Jan Woodhouse, Moyra A Baldwin, Jan Woodhouse

• Publisher: SAGE Publications Ltd
• Year: 2010
• ISBN:
  9781446243534
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

Do you need a succinct introduction to the key theories and principles of palliative care and their application to practice?

Key Concepts in Palliative Care provides just this in a compact, fifty-concept guide to the field. Taking account of the government?s "End of Life Care Strategy", contributors set out the key issues affecting practice across a range of health and social care contexts.

The book covers topics ranging from dying and death to symptom management and spiritual care, backed up with practical examples. Each entry comprises:

oa snapshot definition of the topic

okey points

oa discussion of the main debates

olinks to practice through thought-provoking case histories, and

osuggestions for further reading.

Key Concepts in Palliative Care is an ideal text and handy source of reference for health and social care professionals who are developing their knowledge and skills in palliative care.

1 agencies: resoures
for adults with a palliative
care need in the UK

Helen Fruin

DEFINITION

An adult requiring palliative care can be defined as someone ‘whose disease is not responsive to curative treatment’ (World Health Organisation, 1990, cited in Gehlert and Browne, 2006), and who will, or currently does, require ‘end of life care’ (Department of Health, 2006). The range of agencies specifically organised and available for patients, service users and their carers is extensive. The adult age range, incorporating people across younger, middle, and primarily older ages, together with differentials of location, disease, prognosis, gender, race, culture, religion, affluence, and so on, gives some indication that the agencies required to encompass both the specific and general needs of patients with palliative care requirements need to be vast in range and widely available. Rather than define or list the possible resources that might be required for patients and their families, a broad categorizing of the UK sectors that palliative care agencies may be attributed to with examples of the types of agencies that exist are explored below. ‘Local variations’ will, however, ‘grossly distort equity and efficiency in individual areas’ (Netten and Beecham, 1993). Also, many agencies contacted by individuals may be ‘generalist rather than specialist’ (Roe and Beech, 2005), such as nursing homes, which illustrates the extent and scope of resources available for adults with a palliative care need in the UK.

KEY POINTS

• Three main sectors encompass the majority of agencies concerned with palliative care. These are:
  • voluntary sector,
  • private sector,
  • statutory sector.
• Some may be jointly funded or managed within or across these sectors.
• Accessibility and suitability of agencies need to be determined to offer the best value and use of resources for individuals and families or carers.

DISCUSSION

Voluntary sector agencies

Many of the voluntary agencies are registered as charities. Financial support is crucial to the survival of these organisations and, in some cases particularly for the smaller charities, funding can be precarious to such an extent that service users may be asked, or feel obliged, to offer a donation. Most hospices operate as charities; ‘80% of hospices are independent of the NHS’, with only ‘34% of their funding from government’ (Peckham and Meerabeau, 2007). National agencies stemming from the hospice movement include Marie Curie hospices, day care and outreach services, Macmillan nurse advice and support at home, and agencies that provide advice on specific medical conditions (which may or may not be of a palliative nature) via leaflets, telephone or websites, such as the British Heart Foundation, and others concerned with various types of cancers.

Voluntary agencies that are accessed by people affected by conditions which may become terminal include generalist organisations such as Age Concern or religious-based agencies which can offer either, or both, practical and spiritual support, for example, Nugent Care Society and other Roman Catholic-based care agencies. Carers, also, often draw support from these agencies and will utilize others specifically designed for them such as Crossroads. Crossroads provides, among other support, a domiciliary sitting service to allow carers a short break. For many patients who have palliative care needs, there are issues other than managing pain or unpleasant symptoms and these can be almost as distressing as the terminal condition itself, for example, unresolved family relationships and the care of surviving partners and children: significant support can be obtained from counselling agencies such as the Salvation Army’s Family Tracing Service. Often overlooked but of crucial concern for their distressed owners is the care of pets. There are animal welfare agencies such as the Cinnamon Trust which aims to keep owners with their pets for as long as possible and arranges for their future care (Cooke, 2000).

Private sector agencies

Agencies within the private sector may be funded entirely by service users or receive some funding from other sectors, for example, statutory agencies. Most are profit-making concerns though profits will vary from barely covering costs to those making more substantial returns: location and cost to service users will determine the accessibility of these services. Agencies within the private sector include residential and nursing homes (some may be condition-specific, most are generalist), clinics and hospitals, and domiciliary care/nursing agencies providing brief visits or longer shifts in the final stages of an illness. Some private sector agencies are national organisations, for example, BUPA-managed homes, others are individual to their own locations.

Statutory sector agencies

The statutory sector provides the bulk of primary health and social care for patients and service users with the UK NHS being the main direct provider, or indirect commissioner, of funding and services. As with the voluntary and private agencies, the statutory sector offers a lengthy list of possible services, and again, these may be specific or general to the condition or needs of a patient requiring palliative care. Typical services from pre- to actual diagnosis and progression include those of general practitioners, district nurses, clinics, wards, pharmacies and therapies, for example, treatment therapies such as chemotherapy and ‘activity’ therapies such as occupational and physiotherapies. As with the complexity of people’s social conditions in relation to their palliative condition, medical staff often need to address multi-health needs where other issues, such as a heart condition, may complicate the treatment and management of a patient, and thus require input from other specialist agencies.

Care assessment and management of agency input

From a social care/social work perspective, resources may be jointly funded or managed with, or by, health staff. To ensure service users receive optimal palliative care, statutory agency representatives, for example, nurses or social workers, assessing the needs of the person are best equipped if they are knowledgeable about a range of agencies that may ‘best fit’ the current, and changing needs of the service user. Only a few years ago it was observed (Department of Health, 2006) that ‘50% of people … would like to be cared for and die at home if … terminally ill, (but) …’ at that time only 20% died at home. Assessors, whether from health care or social care sectors, will assess individuals and families according to their discipline and expertise, refer to relevant agencies where appropriate, and aim to offer as inclusively as possible information and guidance about the services realistically available and suitable for the person’s needs.

In social work/care, the drive towards self-directed or personalised care whereby individuals and their family may be given resources to research, recruit and manage their own care services at home will, probably, encourage the growth of voluntary and private sector agencies to support such care packages. This will genuinely enable a more personalised service for people with palliative care needs if a sufficient ‘mixed economy’ (Peckham and Meerabeau, 2007) of all the sectors, as well as the most important element of family and friends’ input, is readily accessible at the point of need. Issues of sensitive and accurate assessments, information sharing, criteria for funding and resource allocation, timing, and the overall management of the range of agencies involved need to be carefully administered to avoid the criticism of ‘quantity, but not necessarily quality’ (Parker, 2005) for service users, and to make the process of palliative care as positive and supportive as possible.

Quality of care

Agencies, like individuals, vary in the quality of care they deliver. While agencies can be expected to adhere to their own and government standards, the governance of quality also comes from the ‘customer’ via service users’ and carers’ feedback, as well as the commissioning agency such as Social Services departments. Nevertheless, it is apparent that there are gaps in assessing agency quality which, perhaps, is not surprising given the vast range requiring regular inspection and collation of feedback. Problems may arise where vulnerable individuals are too ill, frightened or distracted to complain about, or criticise, the services received. This also applies to their families and friends, regardless of whether agencies are residential, domiciliary or clinical. Consistent and objective use of agencies, along with appropriately channelled feedback about the quality of the services they provide (perhaps through star ratings), can provide individuals and assessors with knowledge and power to make informed choices to engage or continue with selected agencies.

PRACTICAL APPLICATION OF THE CONCEPT

Kay is 72 years of age, and her cancer is now advanced. Kay has already referred herself (and her family have) to some agencies, for example, her local GP and social services. She has had a range of NHS interventions which professionals have arranged, with her consent, including diagnostic tests, consultations, surgery, therapies, prescriptions, equipment/aids.

Kay’s social worker from an older persons team has assessed her and her carer, her husband Jim, to discuss care options. This is also done, ideally, in partnership with a medical colleague, GP or nurse. Discussions on hospices, nursing homes and domiciliary care/nursing are on-going, as well as other details such as applying for Attendance Allowance (the local Welfare Rights or Citizen’s Advice Bureau is recommended). Jim’s support is also assessed and discussed, and he would welcome the idea of a volunteer from his local church or Crossroads to come in, just once a week for now, to allow him to go out for a couple of hours. His health and stress will also need to be monitored and supported as well as Kay’s if he is to support her through to the end.

Kay, Jim and their family have already been on websites and telephoned help-lines to research her condition and possible agencies that might help. However, they still need advice as to what is available locally, what eligibility criteria are applied, how long any waiting list might be, whether there are any costs, and crucially, whether they will be professional, reliable and caring. The social worker and her health colleague, from their experience, continue to give as much objective information as they can to help Kay and Jim choose the most appropriate agencies and options, as both their needs will change through Kay’s illness.

See also:   finance issues; multi-disciplinary teams; patient choices and preferences; policy drivers; resources and caring for the carers

FURTHER READING

Cooke, H. (2000) When Someone Dies: A Practical Guide to Holistic Care at the End of Life. Oxford: Reed Educational and Professional Publishing Ltd.

Peckham, S. and Meerabeau, L. (2007) Social Policy for Nurses and the Helping Professions, 2nd edn. Maidenhead: Open University Press.

REFERENCES

Cooke, H. (2000) When Someone Dies: A Practical Guide to Holistic Care at the End of Life. Oxford: Reed Educational and Professional Publishing Ltd.

Department of Health (2006) Our Health, Our Care, Our Say: A New Direction for Community Service. London: Department of Health.

Gehlert, S. and Browne, T. (2006) Handbook of Health Social Work. Chichester: John Wiley & Sons, Inc.

Netten, A. and Beecham, J. (1993) Costing Community Care. Cambridge: Cambridge University Press.

Parker, J. (ed.) (2005) Aspects of Social work and Palliative Care. London: Quay Books.

Peckham, S. and Meerabeau, L. (2007) Social Policy for Nurses and the Helping Professions, 2nd edn. Maidenhead: Open University Press.

Roe, B. and Beech, R. (2005) Intermediate and Continuing Care. London: Blackwell Publishing.

2 attributes of
palliative caring

Moyra A. Baldwin

DEFINITION

In her exploration of the concept of caring Rose (2008) notes that caring cannot be defined neatly in a succinct statement. It can be described as a concept that encompasses behaviours and attitudes that healthcare professionals engage in to help another, such as a patient. Helping is achieved through the relationship between two people: the carer and the cared for. Similarly, in palliative care, a characteristic of caring is the relationship between the healthcare professional and the person with a palliative care need and, or, a member of family, friend or a healthcare professional colleague. The importance of this helping relationship is apparent in the philosophies, guidance and mission statements published by the World Health Organisation, Department of Health and local hospices respectively, and so it appears that there is international, national and local implied understanding of palliative caring. This helping relationship within the confines of palliative care will be examined to provide the focus for discussing the attributes of palliative caring in this chapter.

KEY POINTS

• Palliative caring involves holistic care.
• Attributes of palliative care include developing therapeutic relationship between the carer and cared-for, as well as professional colleagues.
• Therapeutic relationships require that the carer individualises care for the person with end-of-life needs as well as the individual’s family.
• Palliative caring attributes are encompassed in companionship, compassion and competence.

DISCUSSION

When concepts such as palliative caring are, inherently, understood by the people involved in the work yet not necessarily clearly defined, a concept analysis can help provide shared meaning. In the international arena Meghani (2004) conducted a concept analysis of palliative care and showed that, for an American audience, palliative care has four components. First, it involves total, active and individualized patient care, second, it includes family support, third, interdisciplinary teamwork, and finally effective communication. What Meghani identifies is the therapeutic, helping relationship that is essential in caring for individuals and families in the palliati...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• List of figures
• List of tables
• About the editors and contributors
• Preface
• Acknowledgements
• Introduction
• 1 Agencies: resources for adults with a palliative care need in the UK
• 2 Attributes of palliative caring
• 3 Caring for the adult: ‘a reversal of roles’
• 4 Caring for the carers
• 5 Caring for the child with palliative care needs
• 6 Caring for the older person
• 7 Caring for young people
• 8 Communication
• 9 Concept of death
• 10 Coronial process
• 11 Cultural issues in palliative care
• 12 Death
• 13 Environment of care: palliative care within the acute hospital care ward
• 14 Finance issues and the organisation of palliative care
• 15 Financial aspects for patients and carers
• 16 Funerals
• 17 Good death
• 18 The globalisation of palliative care
• 19 Holism
• 20 Hospice movement and evolution of palliative care
• 21 Information technology
• 22 Legal and ethical issues in palliative care
• 23 Loss, grief and bereavement
• 24 Marginalised groups
• 25 Multi-disciplinary teams
• 26 Organ donation
• 27 Organisational management of palliative care
• 28 Palliative care and the person with cancer
• 29 Palliative care for the person with a learning disability
• 30 Palliative care and the person with mental ill-health
• 31 Palliative care and the person with a non-cancer diagnosis
• 32 Palliative care education
• 33 Patient choices and preferences in palliative care
• 34 Policy drivers
• 35 Quality assurance and palliative care
• 36 Reactions of patients and carers
• 37 Rehabilitation in palliative care
• 38 Research in palliative care
• 39 Resources and information: looking for answers
• 40 Sexuality
• 41 Stigma
• 42 Symptom management: complementary and alternative medicine/integrated health
• 43 Symptom management: common symptoms
• 44 Symptom management: difficult/complex symptoms
• 45 Symptom management: emergencies
• 46 Symptom management: the Liverpool Care Pathway for the dying patient (LCP)
• 47 Spirituality
• 48 Stress and palliative care
• 49 Technology: equipment procurement
• 50 Value of life
• Index