How do you 'get started'?

How do you 'get started' planning a palliative care service?

There is no one right or wrong model for the provision of palliative care. The best model is determined by local needs and resources, in consultation with the local health care providers and authorities.

IAHPC believes that each country should be encouraged and enabled to develop its own model of palliative care, appropriate to the needs of the local patients and the available resources, taking advantage of the experience and expertise accumulated in developed countries, and not be expected to copy models more appropriate to affluent countries.

Models of palliative care provision

The following include different models of palliative care provision, including some recommended by the European Association for Palliative Care (EAPC) (9)

It is now widely accepted that no programme or service should be started before:

After that and for the selected model, there must be:

Box 2: Models of palliative care delivery at the hospital

There are 3 ways of delivering PC in the hospital setting:

  • Consultation service
  • Palliative care unit
  • Combination of 1 and 2

There is no evaluative data to recommend one delivery system over another. Each delivery method should provide continuity of care between home, acute care, palliative care and local hospice and facilitate an integrated seamless programme of services for patients and families from diagnosis to death.

Choosing the right model of palliative care service with which to 'get started'

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!

Table 2: Care Matrix for Different Palliative Care Models (based on patient needs and dependency)

Care Factor In-patient Palliative Care Unit Hospital Palliative Care Team Community Palliative Care Service Day Palliative Care Unit Out-patient/ Ambulatory Consultation
Symptoms Moderate/Severe Moderate/Severe Mild/Moderate Mild Mild
Psychosocial complexity/instability Moderate/Severe Moderate/Severe Mild/Moderate Mild/Moderate Mild
Clinical instability Unstable +++ +++/++ ++ + 0
Require other intensive medical treatment 0/+ +++ 0 0 0
Degree of nursing required High High Intermediate Low Minimal
Degree of social support available Low/Variable Low/Variable Available Available at night-time Available
Functional dependency Dependent +++ Variable ++ + 0

In the chapters which follow different types of service are described with pros and cons of each.

What can you learn from others?

In the planning period it is good to visit other similar facilities existing in the country and to learn from their success and failures. If you are the first to open a palliative care service or hospice in your country and maybe you have been abroad and have been impressed with one specific hospice and have learnt about its functioning, policies and operational procedures be realistic in what you can use in your specific situation, what needs to be adapted and what needs to be left out. Do not try to clone a unit that has impressed you!

Search online for palliative care sites and official documents regarding certification and licensing for health services, seek advice from legal Doing work in advance might save you from ending up with a building that cannot be registered in your country and is not suitable for the needs of the patients.

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.

Needs Assessment

It is tempting to rush into starting a palliative care service without doing a needs assessment or giving thought to the topics mentioned above, knowing that we know how palliative care can ease the suffering of many patients. This can be disastrous.

Experience suggests that time spent in answering the following questions is always well spent.

Patients

Priorities

Models of care

Relationships with other agencies

How many beds will be needed?

For administrative/economic/efficiency reasons a unit smaller than 10 beds is not cost efficient unless catering, stores, supplies, central heating, security, pharmacy etc. are available on site or in an adjacent unit/hospital.

It is generally accepted that in a population of 1,000,000 the number who will need a palliative care bed is:

Table 3: Estimation of palliative care beds

Population Per one million
With malignant disease 400-700
With non-malignant disease 200-700
Deaths of those with neurological diseases 170
Deaths of those with psycho-geriatric disease 40
Deaths of those with chronic cardiac/respiratory disease 5000

As guidelines, typical statistics for hospices in the West are:

Financial considerations

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.

The smaller the in-patient unit the higher, proportionately, is the cost. Eighty five percent of expenditure always goes on salaries and wages, whatever the type or size of service.

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.

When a palliative care service is to be independent of any national health service (even if it is a private not for profit foundations), it is prudent to consider the appointment of fundraiser or a fundraising committee to relieve other staff of any responsibility to generate income.

Palliative care has been shown to reduce direct costs of hospitals and heal care system, while guarantee satisfaction with the care for patient and their caregivers.(10, 11)

Educational Responsibilities

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 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.

Discussion with planners

Remember that local/national health care managers may not know much about 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:

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.

The local medical community

The palliative care service needs the cooperation of local medical doctors, to be able to work with them in providing better care for patients.

The local hospital

The relationship with the local hospital(s) must be clearly defined to foster co-operation and to avoid any antagonism.

Other palliative care services

Avoid competition between palliative care providers. It wastes precious resources and may deprive some patients of the care they need and deserve. It can produce confusion in the minds of the public and local health care professionals.

Table of Contents