## 4 introduction

Table of contents

### 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 where knowledge about and funding for palliative care is limited.

#### Most topics mentioned here are dealt with in detail in other sections

### What is palliative care?

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

### "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 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.

### 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)
- General practice (Family Medicine)
- Care of the Chronically Ill
- Care of Cancer (Oncology)
- Care of the Incurable
- Pain Relief Service

Most emphatically palliative care is not euthanasia or 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 causes
- 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 professional carers, patients, relatives, and colleagues
- Respect for truth and honesty in all dealings with patients, relatives and fellow professionals.
- Inter-professional / multi-disciplinary team caring where possible

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.

### Does palliative care have world-wide relevance?

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.

#### 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 |
Diarrhoea | 5 |

### 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, whatever its model.

#### After that there must be

- Detailed consideration of cost implications (capital and revenue), short-term and long-term
- Detailed consideration of staffing implications and recruitment challenges
- Detailed consideration of the educational role of any planned service
- Detailed consideration of relations with local hospitals and clinics, sharing of facilities and the procurement of all necessary pharmaceuticals

### Needs Assessment

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.

### Patients:

- How many patients likely to benefit from palliative care are there at any one time?
- What is their age distribution?
- What is the prevalence of symptoms?
- What are thought to be the other unmet needs of these patients?
- What proportion is dying at home and in hospital?
- Which diseases in a defined community are likely to benefit from palliative care?

### Priorities:

- Is the service primarily to provide care in the home, 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, in the home or in local hospitals?
- 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? (as distinct from wanting to remain at home as long as possible)

### 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 and /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?
- What will be the relationship with the local hospital?
- What will be the relationship with the local medical community?
- Who will prescribe and dispense medications and be responsible for opioid storage etc?.
- Will there access to basic (non-sophisticated) diagnostic facilities and to case notes of all patients referred to the service?

### Discussion with Strategic Planners

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.

### 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(s) must be clearly defined to foster co-operation and to avoid any antagonism.
- Will the 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?
- What charges will be levied for such services?
- If hospital patients are transferred to palliative care, will their records come with them? Mail or electronic?

### 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.
- Each palliative care provider should define what service they can offer in a defined geographical area and then, in discussion with other providers, decide who does what.
- Explore together closer co-operation. For example can they share a fund-raiser? Can they collaborate on purchasing pharmaceuticals to bring down the price? Can they share educational work, one teaching doctors, the other nurses.
- Can they co-operate in research and data collection?

### 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.

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.

### Consideration of Staffing and Recruitment

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!

### 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 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.

### 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!

### Care Matrix for Different Palliative Care Models (based on patient needs and dependency)

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.

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