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 where knowledge about and funding for palliative care is limited.
The World Health Organisation (WHO) 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 because it is impossible to care for a critically ill person if the needs of relatives are not also addressed.
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. (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
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 for health care professionals 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" be used in all professional communications and publications.
Though the principles of palliative care are applicable in each of the following they are NOT palliative care services
Most emphatically palliative care is not euthanasia or physician-assisted suicide, both of which focus on death rather than on the quality of life.
The pros and cons of each will be discussed in separate sections of Getting Started.
The key features of palliative care:
Do many dying people suffer so much that 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 life (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.
If health authorities are not impressed with the wealth of evidence from other countries demonstrating the need for palliative care then research into the unmet suffering and needs of your country / district will need to be done and the evidence shown to the authorities.
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 and their belief system.
The word "appropriate" is the important one, and why Getting Started has been produced by the IAHPC which does not aim to implant western style medical care worldwide.
| 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 | |
| Diarrhoea | 5 |
It is now widely accepted that no programme or service should be started before:
WARNING: It is tempting to see the unnecessary suffering of many patients in the late stages of life and, knowing that palliative care will be able to ease their suffering, rush into starting a palliative care service without doing a needs assessment or giving thought to the topics mentioned above. This can be disastrous.
Experience suggests that time spent in answering the following questions is always well spent.
Remember that local / national health care managers may not know much about modern palliative care. They may need to visit established palliative care services or be presented with data from other services serving similar population groups.
They will want to be persuaded: that a palliative care service is needed, not duplicating an existing service; that its senior staff will cooperate with them rather than adopting a combatant attitude; that there is a real possibility of collaboration leading to mutual benefit; that the proposed new service may even reduce costs; that the proposed new service will fit seamlessly into existing care.
Discussions should be held with all other local health care providers who may be affected by the planned palliative care service. The key to successful collaboration in palliative care is partnership, not criticism or competition.
Experience shows that any hospice/palliative care service is considerably more expensive to operate than most planners had anticipated. Raising capital is easier than raising revenue.
Eighty five percent of expenditure always goes on salaries and wages, whatever the type or size of service.
The smaller the in-patient unit the higher, proportionately, is the cost.
When a palliative care service is to be independent of any national health service (though not necessarily "private" in the sense of being “ For profit “) it is prudent to consider the appointment of an Appeals Officer or Fund-raiser to relieve other staff of any responsibility to generate income. The better an independent service blends in effectively with other health care providers in the locality, the more difficult it is to raise charity funds without great effort because it has lost its “independent” needy image.
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.
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 influenced by the diseases from which the patients are suffering (AML patients often having higher dependence and therefore 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.
| Care Factor | In-patientPalliative Care Unit | Out-patient/ Ambulatory Consultation | Community Palliative CareService | 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 +++ | 0 | ++ | + | +++ |
| Functional Dependency | Dependent +++ | 0 | ++ | + | Variable |
| Require other intensive medical treatment | 0 / + | 0 | 0 | 0 | +++ |
| Degree of Social Support available | Low/Variable | Available | Available | Available at night time | Low/Variable |
| Degree of nursing required | High | Minimal | Intermediate | Low | High |
Palliative care, whether in hospital, hospice, or home, is always multi-professional. When attempts are made to reduce costs by excluding one professional group or another, the quality and comprehensiveness of the service deteriorates. 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 though many will apply Personality, aptitude and commitment are more important than professional experience.
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. No member of staff, junior or senior, should ever be expected to learn the basics of palliative care on the job!
Every palliative care service should be regarded as an educational facility for fellow professionals – not as the sole provider of palliative care. Educational outreach should be built in from the start of any service.
This may involve time allocated to teaching, room(s) for tutorials, a small library, budgeting for teaching equipment or even an 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.
The matrix below illustrates 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!
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.
In the chapters which follow different types of service are described.