Introduction
Many people do not know what hospice / palliative care is, and what it is not; what its essential features are and how it can be provided. Spending time (even years) planning a palliative care service is always time well spent.
This series of short papers has been prepared for those interested in starting palliative care services in developing countries, or in developed countries, where knowledge about and funding for palliative care are minimal.
What is palliative care?
The World Health Organisation has produced a detailed and useful definition, valuable when negotiating with local and national health departments who may not be familiar with the essential features of such care provision.
A more succinct definition is " Palliative care is the care of patients with active, progressive, far-advanced disease with a limited life expectancy, for whom the focus of care is the quality of life." This is a reminder that palliative care is not disease-specific, is not restricted to a defined number of months or weeks of life, and is centred on quality rather than quality of life. Taken for granted in this definition is that the relatives must also be factored into the care programme, it being impossible to care for a critically ill person if their needs are not also addressed.
Different (sometimes confusing) terms used about palliation
The principles of palliative care are the principles of all good clinical care, whatever the illness, whatever the stage of it, whether or not it is life-threatening, whatever the age, gender, race, class or creed of the patient.
Palliative procedures are valuable components of modern palliative care but not in themselves comprehensive palliative care. They include radiotherapy, chemotherapy, the insertion of stents, the drainage of effusions, the stabilization of bones and even procedures as simple but valuable as catheterisation.
Specialist palliative care is that provided by a service (which may or may not have in-patient beds) where the principal clinicians (doctors, nurses, social worker and other team members) have all had advanced training in the principles of modern palliative care and spent most, if not all, of their time in the practise of palliative care. (In a few countries where palliative medicine and palliative care nursing are recognised as medical and nursing specialties the services in which they work are essentially secondary or tertiary referral services.)
Throughout 'Getting Started' palliative care will refer to the care defined in the shorter definition above
'Hospice' or 'Palliative Care'? Are they the same thing?
Yes, in most respects they are. However the word hospice is better known to members of the public than palliative care. Palliative Care is the preferred term in health care circles particularly since it became a nursing specialty in so many countries and palliative medicine became a medical specialty in the UK in 1987. Sadly some health care professionals regard hospice as care for the dying provided either by well-intentioned volunteers or the ultra-religious. In North America 'hospice' is often used to describe not a building or care programme but a philosophy of care ("He is now so ill he needs hospice".).
It is recommended that the term 'palliative care' is used in all professional communications and publications
What palliative care is not
Though the principles of palliative care are applicable in each of the following they are NOT palliative care services
- Care of the Elderly (Geriatrics)
- Care of the Chronically Ill
- Care of the Incurable
|
|
- General practice (Family Medicine)
- Care of Cancer (Oncology)
- Pain Relief Service
|
Most emphatically palliative care is neither euthanasia nor physician-assisted suicide, both of which focus on death rather than on the quality of life.
Models of palliative care provision
In-patient palliative care unit within a general (secondary or tertiary referral) hospital
In-patient palliative care unit, detached or even distant from a hospital. Often termed either a 'free-standing unit' or a 'hospice'
Community palliative care service, caring for patients at home, in nursing homes or living with relatives
Hospital palliative care team, operating with or without dedicated beds, in a secondary or tertiary referral hospital
Day palliative care unit, caring for patients living at home but able to be brought in for clinical and social care on a day basis
The pros and cons of each will be discussed in separate sections of Getting Started.
The key features of palliative care
Recognition and relief of pain and other symptoms, whatever their cause
Recognition and relief of psychosocial suffering, including appropriate care and support for relatives and close friends
Recognition and relief of spiritual / existential suffering
Sensitive communications between carers and patients, carers and relatives, and carers and colleagues
Respect for truth and honesty in all dealings with patients, relatives and fellow professionals.
Inter-professional / multi-disciplinary team caring where possible
Is palliative care needed?
Emphatically yes! There are many published reports, based on objective as well as subjective observations, showing poorly relieved suffering experienced by people in the final years and months of their lives.(see tables below)
They had much physical; suffering including high levels of pain, breathlessness, weakness, loss of appetite, nausea and vomiting, constipation, insomnia, sores and convulsions.
Their psychosocial suffering included anxiety, fear and apprehension, depression, loss of dignity, loneliness, a sense of being a burden on others and no longer being valued as a person, feeling that their suffering was not always recognised or taken seriously by their carers.
Their existential suffering included questions of meaning - of life, death and suffering; questions about religious faith - its relevance to them, the place of prayer and sacraments, the need for forgiveness
Symptoms in the Final Days of Life (collated from several studies) |
| |
|
|
|
|
|
|
Symptom |
|
% |
|
|
|
| |
|
|
|
|
|
|
Anorexia |
|
|
80 |
|
|
|
Asthenia |
|
|
82 |
|
|
|
Confusion |
|
|
45 |
|
|
|
Constipation |
|
55 |
|
|
|
Dry Mouth |
|
70 |
|
|
|
Dyspnoea |
|
|
45 |
|
|
|
Jerking / twitching |
|
12 |
|
|
|
Nausea |
|
|
25 |
|
|
|
Noisy breathing |
|
50 |
|
|
|
Pain (of all types) |
|
65 |
|
|
|
Agitation / restlessness |
45 |
|
|
|
Sweating copiously |
|
12 |
|
|
|
Urinary dysfunction |
|
35 |
|
|
|
| |
|
|
|
|
|
|
Does palliative care have world-wide relevance?
Emphatically yes! No matter where people live, whatever their age, gender, education, class, race, language, culture, creed or disease - they describe the same suffering and the same needs, and respond equally well to appropriate palliative care, which takes into account their culture.
The word 'appropriate' is the important one, and why Getting Started has been produced by the IAHPC.
| |
The spectrum of suffering in cancer and cardiac patients |
|
| |
|
|
|
|
|
|
|
Symptoms |
|
|
Cancer % |
|
|
Cardiac % |
|
| |
|
|
|
|
|
|
|
Pain |
|
|
75 |
|
|
78 |
|
Breathlessness |
|
40 |
|
|
61 |
|
Anorexia |
|
|
75 |
|
|
43 |
|
Constipation |
|
75 |
|
|
37 |
|
Nausea/vomiting |
|
45 |
|
|
32 |
|
Convulsions/fits |
|
45 |
|
|
59 |
|
Fungating lesions |
|
10 |
|
|
|
|
Diarrhea |
|
|
5 |
|
|
|
|
| |
|
|
4 |
|
|
|
|
| |
|
|
|
|
|
|
|
How do you "get started" planning a palliative care service?
It is now widely accepted that no programme or service should be started before:
There has been a well conducted needs assessment study
There has been discussion with local, regional and even national health care planners;
There has been discussion with all other local groups, statutory and voluntary, providing hospice / palliative care in whatever form.
And.........
There has been detailed consideration of cost implications, including capital and revenue, short-term and long-term ;
There has been consideration of staffing implications and recruitment challenges;
There has been consideration of the educational role of any planned service;
There has been consideration of relations with local hospitals and clinics, and the procurement of all necessary pharmaceuticals.
Needs Assessment
It is true that many health care initiatives have been developed without a prior needs assessment, but such an assessment is essential for palliative care. Since there are so many patients who need this care, and so much unrelieved suffering, it is tempting to set up a programme without establishing it is the best model for the local clinical and educational needs. Starting without a needs assessment is most strongly not recommended.
Experience suggests that time spent in answering these questions is always well spent.
Examples of questions to be asked include
Patients
which diseases in a particular community are likely to benefit from palliative care?
how many potential patients are there?
what is their age distribution?
what is the prevalence of symptoms?
what are thought to be the unmet needs of these patients?
what proportions are dying at home or in hospital?
Priorities
is the service primarily to provide care or to train family members to care better?
is the service primarily to provide care or to educate and train local health care professionals to provide better care?
is the service primarily to provide care or simply assist the doctors and nurses already managing the patients in the community or hospital?
is the goal to enable more people to remain at home for longer periods?
is the ultimate goal to enable more people to die at home?
Models of care
what are the obstacles to good palliation as perceived by health care workers in the area?
should the proposed service provide home care or inpatient care?
should there be a palliative care ward in the local hospital or a free-standing palliative care unit / "hospice"?
should a hospital palliative care service manage the patients or provide advice and support?
will education be provided and if so which model of care provision will best facilitate it?
Relationships with other agencies
what will be the relationship with
any existing palliative care services?
the local hospital?
the local medical community?
are medications available and who will prescribe and dispense?
is there access to basic diagnostic facilities and to case notes?
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
Discussions should be held with all other local health care providers who may be affected by the planned palliative care service
The local medical community
the palliative care service needs the co-operation of local doctors, in order to be able to work with them in providing better care for patients
doctors who feel threatened by the service or feel their patients are being' taken over' will not be supportive and will not refer patients who might benefit from palliative care
it is best to assume that even though some doctors may not know much about palliative care, they have their patients' best interests at heart and want to learn how to better care for them
The local hospital
the relationship with the local hospital must be clearly defined to foster co-operation and to avoid any antagonism
will palliative care doctors be permitted to see patients in the hospital?
will the hospital's diagnostic facilities be available for palliative care patients?
will drugs be available from the hospital pharmacy?
if hospital patients are transferred to palliative care, will their records come with them?
Other palliative care services
to avoid unhealthy competition between palliative care providers
competition usually wastes precious resources and may deprive some patients of the care they need and deserve
competing services can produce confusion in the minds of the public and the local health care professionals
each provider to define what service they can offer and then, in discussion with other providers, decide who does what
catchment areas can be defined
agreement can be reached on the types of patients accepted by each service (e.g. non-malignant disease, AIDS, etc)
to foster co-operation in
the use of specialised services e.g. lymphoedema treatment
education and training
The community
appointment of a local fund-raiser will raise the image of the new palliative care service and hopefully bring in essential income for its
development
ideally, this should be someone with no clinical responsibilities
Financial considerations
Experience shows that any hospice/palliative care service is considerably more expensive to operate than most planners had anticipated. Eighty five percent of expenditure always goes on salaries and wages, whatever the type or size of service. It is seldom easy to raise capital but it is usually much easier than finding funds for running expenses.
When a palliative care service is to be independent of any national health service (though not necessarily "private" in the sense of being in-come-generating) it is prudent to consider the appointment of a staff Appeals Officer or Fund-raiser to relieve other staff of any responsibility to generate income. The longer an independent service operates, and blends in effectively with other health care providers in the locality, the more difficult it is to raise charity funds without great effort.
It is counter-productive in this work to try to reduce running costs by reducing staff. Small economies must be achieved through vigilance with telephone, postage, travel, catering and printing costs.
Consideration of Staffing and Recruitment
There is no doubt that good palliative care requires a high nurse: patient ratio. This applies to both in-patient care and community care. Ratios cannot be given because they are, to some extent, influenced by the diseases from which the patients are suffering (AML patients often requiring more nursing care than cancer patients, for example). The availability of other nurses working in patients' homes, work load, distances to travel in the community, whether or not there is a hospital palliative care team etc. all affect nurse: patient ratios. It is safer to over-estimate staffing needs when planning a service.
Palliative care, is always multi-professional. This principle applies whether it is an in-patient unit, a community palliative care service, a hospital palliative care team, a day unit or an education service. It applies wherever the service is provided. When attempts have been made to reduce costs by excluding one professional group or another, the quality and comprehensiveness of the service have deteriorated. Having said that, it must be noted that the roles of different professions vary greatly depending on the type of service offered.
The physician plays a major and very prominent role in a hospital palliative care team, whereas in a day hospice the medical presence is almost subliminal. How much a doctor or a nurse does in a community palliative care service depends on the experience and roles of family doctors and community nurses, if available. Generally, professions allied to medicine (physiotherapy, occupational/art/music/speech therapy) play an important role only in in-patient units and need not be factored into plans for community services.
Recruitment of staff may be expected to be difficult. Personality, aptitude and commitment are more important than professional experience. However, in most developed countries, legal and professional requirements will dictate minimal levels of qualifications for all members of staff. All staff, whatever their profession, discipline, qualifications and experience, will need comprehensive pre-service training before starting this work, much of it based in the new service and the rest in established palliative care services. It should not be expected that any member of staff, junior or senior, learn the basics on the job!
Educational Responsibilities
It is slowly being realised around the world that there will never be sufficient palliative care services to meet everyone's needs. More importantly, there is recognition that this should never be an aim of the hospice movement. Each hospice/palliative care service should see itself as an exemplar of palliative care, a demonstration model, and as a centre for professional education and training for local doctors and nurses at different stages of their careers.
In every country, the essentials of palliative care will be taught principally by staff in the palliative care services for many years to come. Therefore each such service must build in an educational component from the beginning. This may take the form of time allocated to teaching, rooms for tutorials, a small library, budgeting for teaching equipment or even a member of staff designated primarily for education.
There must be discussions with local universities, colleges and educational establishments on how the palliative care unit can collaborate with them in teaching modules even before a new service starts. It is perhaps unnecessary to point out that such work generates little if any income, essential as it is.
Clinical Collaboration
It is impossible to overstate the importance of good relations with neighbouring clinical units, whether major teaching hospitals or humble district clinics. From the outset there must be clear referral procedures, transfer arrangements, agreement on access to case notes and confidential documents, arrangements for specialist advice when required, information leaflets for patients, and well-defined lines of communication between the many clinicians involved in patient care.
In some countries it also will be necessary to make arrangements for the supply and transport of pharmaceuticals. In all countries it will be necessary to meet all legal requirements with regard to the storage and administration of "controlled substances".
Experience round the world has demonstrated that palliative care soon gains public approval and support. It takes much longer to gain the respect, and then the active co-operation of professional colleagues.
The better the initial planning, the sooner the new service is accepted and engrafted into the local health care scene.
Differing local needs and conditions call for different models of care provision -
In a country without primary care / general practice services, community palliative care or day care may not be the most appropriate models. Thought should be given to a small in-patient unit or a hospital palliative care team
In one where most patients are cared for in hospitals, a hospital palliative care team might be the most appropriate
In a country where funds are available to operate a free-standing service, that might be the most appropriate.
Where there are few doctors and nurses interested in providing palliative care, team working might not be possible but care can still be given at home and in hospital after appropriate planning
Where palliative care is not yet taught in medical or nursing school a hospital palliative care team might be a good way to demonstrate the principles of palliative care to junior doctors and nurses
Choosing the right model with which to " get started"
The matrix below might help to illustrate the differing indications, based on the different levels of suffering and dependency of the patients. It must be emphasised, however, that it is not being recommended that at the stage of "getting started" each model be started and developed simultaneously!
Care Matrix for Different Palliative Care Models (based on patient needs and dependency)
Care Factor |
In-patient
Palliative Care Unit |
Out-patient/ Ambulatory Consultation |
Community Palliative Care
Service |
Day Palliative Care
Unit |
Hospital Palliative Care Team |
Symptoms |
Moderate/Severe |
Mild |
Mild/Moderate |
Mild |
Moderate/Severe |
Psychosocial Complexity/Instability |
Moderate/Severe |
Mild |
Mild/Moderate |
Mild/Moderate |
Moderate/Severe |
Clinical instability |
Unstable +++ |
O |
++ |
+ |
+++ |
Functional dependency |
Dependent +++ |
O |
++ |
+ |
Variable |
Require other intensive medical treatment |
O/+ |
O |
O |
O |
+++ |
Degree of Social Support available |
Low/Variable |
Available |
Available |
Available at night time |
Low/Variable |
Degree of Nursing Care required |
High |
Minimal |
Intermediate |
Low |
High |
What must be emphasised is that there is no single model appropriate in all situations. Cloning a model found effective in one country or one culture, can be a recipe for disaster.
Previous Page Main Next Page
