The IAHPC Manual of Palliative Care
2nd Edition

VI. Organizational Aspects of Palliative Care

Table of Contents

REGULATION AND ACCREDITATION IN PALLIATIVE CARE

EDUCATION AND TRAINING FOR SERVICE STAFF

EXTERNAL EDUCATION AND TRAINING

INFORMING PEOPLE ABOUT PALLIATIVE CARE

STRESS IN PALLIATIVE CARE

HOW TO START A PALLIATIVE CARE SERVICE

• the need for a palliative care service is often so great that those eager to establish it do not always give it the thoughtful planning that is needed
• the planning stage may take much longer than expected, sometimes years

• the situation will vary greatly from one country to another and even within a single country
• IAHPC believes that each developing country should be encouraged and enabled to develop its own model(s) of palliative care, taking advantage of the experience and expertise accumulated in developed countries, and not be expected to copy models more appropriate to affluent countries

• a well-conducted needs assessment (subjective assessment of need is never adequate)
• discussion with local, regional and even national health care planners (who may not know what palliative care is)
• discussion with all other local groups (statutory and voluntary) providing palliative care in any form (duplication of services is wasteful and counterproductive)
• consideration of the model(s) of care which might best meet local needs
• consideration of staffing implications and recruitment issues
• consideration of the educational role of any planned service
• consideration of relations with local hospitals, clinics and diagnostic facilities
• consideration of the availability of equipment and pharmaceuticals
• consideration of capital investment needs, funding requirements, reimbursement issues

Needs Assessment

Discussion with Strategic Planners

• those planning a new palliative care service often complain that strategic planners and health care managers do not want to listen to them and seem to be ignorant about palliative care
• co-operation with them may not be easy but it is never wasted time
• the planners may need to visit established palliative care services or be presented with data from other services serving similar population groups
• the closer the collaboration, the better the eventual service
• the aims of these discussions are
• to inform each other of needs and possible responses
• to prevent duplication of activities and waste of precious resources
• to foster co-operation rather than competition and conflict
• a well planned service, fitting neatly into a local or regional plan, will enable patients, whether at home or in a hospital, to receive seamless palliative care

Discussion with Other Providers

Considerations of Staffing and Recruitment

• palliative care must be multiprofessional or interprofessional
• optimal palliative care requires the co-ordinated input from doctors, nurses and various allied health professionals
• no one profession can provide palliative care on its own, no matter how committed they are
• palliative care promoted as nursing care, without any need for medical involvement, will not be recognised by doctors
• there is often much healthy overlap of roles in an interprofessional team
• for example nurses can be as effective at counselling as most doctors, but neither may be as good as a social workers or pastoral care specialists
• this requires staff to be flexible to avoid conflicts between the different professions
• there is no place for territorialism in palliative care
• relatives taught to do some nursing care should be seen as complementing the trained nurses rather than replacing them
• planning the nursing establishment
• depends primarily on the level of dependency of the patients
• patients with different diseases have different nursing needs
• e.g., patients with motor neurone disease (ALS) often need more nursing care than most cancer patients
• for community-based services, other factors relate to
• the case load
• the distances to be traveled
• whether other community nurses are available
• the availability of doctors with a knowledge of palliative care
• whether the palliative care nurses will do nursing tasks or are primarily support/resource/advisory nurses
• consider the possibility of sharing staff with other medical services
• sharing social workers, occupational therapists, pastoral care workers and other allied health personnel, which
• can be an educational experience for each group
• may reduce expenses
• the possibility should always be considered for nurses to rotate between the hospital and the community palliative care service once they have been adequately trained
• do not underestimate the need for both pre-service and in-service training
• many health care professionals (doctors, nurses, and allied health personnel) think that palliative care is simple
• something that can be done without training, something that we all do naturally
• others think of it as care of the chronic sick or of the elderly
• some think of it as merely offering psychological support
• the result is that many who apply to work in palliative care services are totally unsuited for the work
• all personnel working in palliative care for the first time will need training
• what personal and professional qualities should be looked for when recruiting staff?
• personality is far more important than anything else
• the undoubted stresses of palliative care are more related to the personalities of the staff than to the work itself
• they are able to work harmoniously with others
• they are flexible and able to compromise
• previous experience of palliative care, geriatric care and psychotherapy are not essential
• everyone will need training
• a sense of humour is essential

Educational Responsibilities

• every palliative care service must be prepared to offer an educational service
• varies from an occasional meeting to a full scale course, according to local needs and resources
• to share palliative care skills, expertise and enthusiasm with other (non-palliative care) health care professionals
• it is to be hoped that they are the ones who will provide most of the palliative care in the future

Clinical Collaboration

• the ultimate goal in planning a palliative care service is for patients to receive optimal palliative care wherever they are (in hospital, hospice or at home), and care which continues in a seamless manner when they are moved between places of care
• all local health care providers who may be affected by the palliative care service should be involved in the planning stage, or at least kept well informed
• details must be discussed from the early planning stages of
• which patients should be referred
• when and how they should be referred
• how the new service will integrate with hospital services
• how the new service will integrate with general practitioners
• availability of diagnostic services

REGULATION AND ACCREDITATION IN PALLIATIVE CARE

• This requires that palliative care services be audited and the professional staff accredited as for any other health care service

Organisational accreditation

• in some countries, national palliative care associations have developed criteria or standards of care by which palliative care services are judged or accredited
• these standards are designed to assess
• whether a service is operating efficiently (to satisfy government agencies or whoever is funding the service)
• whether a service is meeting the needs of its patients (to maintain the good name of palliative care and satisfy members of the community)
• accreditation audits are usually performed every 3 to 5 years

Professional accreditation

• in some countries, professional medical and nursing organisations have established postgraduate qualifications for specialists in palliative care
• the criteria to obtain these qualifications varies, but might include
• a specified number of years working in palliative care
• attendance at regular courses of continuing education
• studying for a specialist diploma or degree in palliative care
• in any particular country, the accreditation of doctors and nurses in palliative care should be the same as for any other specialty

EDUCATION AND TRAINING FOR SERVICE STAFF

• routine professional education and training does not adequately equip them to offer the best standard of palliative care

• knowledge of modern methods of pain and symptom management
• understanding of the complex psychosocial needs of the terminally ill and their relatives
• understanding of spirituality in relation to palliative care
• understanding of cultural and ethnic issues in relation to palliative care
• communication skills in relation to palliative care
• understanding of the ethical issues in palliative care
• bereavement care
• working as a member of an interprofessional team

• same requirements as above
• less emphasis on pharmacological methods in pain and symptom management
• greater focus on observing and recording patients' suffering

• are needed to
• to maintain skills
• keep up-to-date with new developments
• include
• clinical meetings and case discussions
• journal clubs
• invited speakers
• conferences, including reporting-back sessions after the meeting
• visits to other units, particularly if they are of similar size and scope of work
• should be co-ordinated by one member of staff
• program development
• ensuring that each staff member is given the opportunity to attend appropriate courses or conferences
• encouraging all personnel to keep a record book of professional development
• there should be budgetary provision for continuing education
• each member of staff should keep a record of their specialist training, courses and conferences attended, etc

Library facilities

Internet access

EXTERNAL EDUCATION AND TRAINING

• this should be planned from inception
• it is too often left until after the clinical work and budget are established

• set up a committee to oversee the educational work of the unit (e.g. palliative care doctor, nurse tutor, local GP, hospital specialist, all with an established interest in palliative care and some experience of teaching)
• be clear what the palliative care unit can offer in terms of time and available expertise
• cater for all groups, not just doctors
• discuss perceived needs with the groups
• always obtain feedback after all teaching sessions
• involve local colleges and teachers, especially for topics about which the palliative care unit does not have expertise
• provide coverage of all aspects of palliative care, not just pain control
• don't expect it to generate income

• each palliative care service must design its own model for education, appropriate to local needs and local resources, in co-operation with other providers, be they universities, colleges, other palliative care units, governments or charitable agencies
• use modern technology if it is available but do not assume that it replaces a gifted teacher
• keep the teaching simple
• palliative care need not be made to sound sophisticated to be worthwhile
• principles are more important than the minutiae

• if resources are limited, which professional groups should be given priority for education and training?
• priorities can only be decided locally, but
• for palliative care to succeed, the doctors must be won over and give it their enthusiastic support
• the younger the doctors and nurses being offered training, the quicker change occurs in local palliative care practice

INFORMING PEOPLE ABOUT PALLIATIVE CARE

Informing politicians

• it affects the people they represent
• it requires money over which they have some control
• it is an integral part of modern health care
• issues raised by it - quality of life, value of life, euthanasia - are important issues in modern society
• issues related to the availability of opioids and other medications are important issues in developing countries

• establishing an All Party Parliamentary Palliative Care Group. Such groups meet quarterly to hear a very brief talk, are given regular briefings on all topics central to palliative care provision in that country (funding, staffing, resources, opioid availability etc ) and sent an information pack several times a year to keep them up-to-date.
• inviting every local politician to visit the palliative care units in their constituency and attend all public functions.
• inviting the parliamentarians to open new buildings, launch new projects, present prizes - so as to keep their names and the work of the palliative care unit before the public

Informing the press

• they influence public opinion
• they influence politicians
• they can help to raise funds and public awareness
• they offer a platform to deal with key issues such as euthanasia, resource allocation, and opioid availability

• being sent regular press briefings by a professional Press / PR Officer employed by the National Palliative Care Association. This ensures high quality briefings and saves individual units trying to prepare press statements
• by inviting local and national press to all palliative care events, big or small
• by having a national panel of palliative care experts willing and able to speak on radio or appear on TV when matters related to palliative care are being discussed
• by inviting photographers to all public-interest events in a palliative care unit
• by having press briefings, preferably chaired by someone with PR experience, when new palliative care projects / services / courses are being launched
• by keeping them informed of what is happening in the rest of the world of palliative care. (There are few better incentives to improve services than learning how much better other countries seem to be doing it)

Informing the Professionals

• there are often misunderstandings about what palliative care is. It is seen as terminal care or geriatric care or care of the incurable or care of the chronic sick or as being appropriate only to oncology patients or a dignified and well-intentioned form of euthanasia.

• by seeing the nature and effectiveness of palliative care when we are called to see their patients. Beyond doubt this is the best demonstration that can be offered
• by the quality of our correspondence about patients, our clinical presentations, our professional papers in peer-reviewed journals and our talks at conferences and meetings
• by being invited to visit palliative care units either as visitors or to advise on patients or to attend 'grand rounds' or clinical meetings
• by the quality of our clinical and organisational audits and standard setting
• by the quality of published papers emanating from palliative care services

Informing the General Public and Patients

• by hearing about it on the media, reading about it in the press
• by meeting people who have received it or whose relatives have received it
• by reading explanatory leaflets about it in the offices of their family doctors and in hospital waiting rooms
• by reading how they can help it financially in leaflets prepared for their legal adviser's offices
• by reading the special leaflets prepared for every patient, every visitor to each palliative care service in the country

STRESS IN PALLIATIVE CARE

What causes stress in palliative care?

• infrequently: matters pertaining to patients and families
• difficult dysfunctional families
• emotional attachment to patients
• frequently: matters related to personal problems, unrealistic goals and the organisation itself
• organisational
• poor administration and management
• poor team leadership
• unreasonable clinical workloads
• reimbursement issues
• inadequate funding for infrastructure, personnel or medications
• unrealistic goals
• attempting to solve all problems
• attempting to deal with long-standing family problems
• personal stresses are the main cause of stress at work
• personal
• family

How do you deal with stress in palliative care?

• address and remedy organisational problems
• ensure that the goals of the team as a whole and its individual members are realistic
• workers have to take some responsibility for their own psychological health
• whatever the cause, a service has to have adequate support systems in place
• a new service should have a formal staff support system
• a monthly multiprofessional meeting led by an experienced facilitator
• may no longer be required after about two years when the staff are comfortable with each other and their goals realistic
• importance in staff selection: can the person recognize stress, do they have other interests, have they worked in a team, are they flexible?

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©2008 Published by IAHPC Press