The IAHPC Manual of Palliative Care
2nd Edition

I. Principles and Practice of Palliative Care

Table of Contents

.

CONTENTS

DEFINITIONS

FAQs

THE NEED FOR PALLIATIVE CARE

THE GOALS OF PALLIATIVE CARE

PALLIATIVE CARE AND SUFFERING: INTERPROFESSIONAL CARE

MULTIDISCIPLINARY and INTERPROFESSIONAL TEAMS

PRINCIPLES OF PALLIATIVE CARE

COMMUNICATION WITH PATIENTS

ADVANCE CARE PLANNING

MODELS OF CARE

INTEGRATION OF PALLIATIVE CARE INTO CLINICAL CARE

BARRIERS TO PALLIATIVE CARE

.

DEFINITIONS

Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.

The following should be noted

• active disease: this activity can be confirmed and measured objectively by clinical examination and investigations

• progressive disease: this too can be assessed clinically

• far-advanced disease: more difficult to define but examples are
• extensive metastatic disease in cancer
• refractory cardiac failure
• total dependency in neurodegenerative conditions or A

• focus on the quality of life is the key feature of the definition

• it is person-oriented, not disease-oriented
• it is not primarily concerned with life prolongation (nor with life shortening)
• it is not primarily concerned with producing long term disease remission
• it is holistic in approach and aims to address all the patient’s problems, both physical and psychosocial
• it uses a multidisciplinary or interprofessional approach involving doctors, nurses and allied health personnel to cover all aspects of care
• it is dedicated to the quality of whatever life remains for the patient

• palliative care is appropriate for all patients with active, progressive, far-advanced disease and not just patients with cancer

• palliative care is appropriate for patients receiving continuing therapy for their underlying disease
palliative care should never be withheld until such time that all treatment alternatives for the underlying disease have been exhausted

.

The message of palliative care is that whatever the disease, however advanced it is, whatever treatments have already been given, there is always something which can be done to improve the quality of the life remaining to the patient.

.

WORLD HEALTH ORGANIZATION DEFINITION

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care

• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Intends neither to hasten or postpone death
• Integrates the psychological and spiritual aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Offers a support system to help the family cope during the patient’s illness and in their own bereavement
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
• Will enhance quality of life, and may also positively influence the course of illness
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications

http://www.who.int/cancer/palliative/definition/en/

.

F A Q s

Is Palliative Care the same as Hospice Care?

Yes, the principles are the same.

• hospice means different things in different countries - it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
• it is better to adopt and use the term palliative care

Should a Palliative Care service provide care for patients with chronic diseases?

No, although their care is important.

• patients with chronic conditions such as rheumatoid arthritis, degenerative diseases, diabetes mellitus and similar conditions usually do not have active, progressive, far-advanced disease
• nevertheless, many of the principles of palliative care are appropriate to the management of patients with chronic diseases

Should a Palliative Care service provide care for patients with incurable diseases?

No, although their care is important.

• as with patients with chronic diseases, these patients usually do not have active, progressive, far-advanced disease
• nevertheless, many of the principles of palliative care are appropriate to the management of patients with incurable diseases

Should a Palliative Care service provide care for patients incapacitated by their disease?

No, although their care is important.

• patients incapacitated by psychiatric illness, cerebrovascular accidents, trauma, dementia and the like deserve special care but they usually do not have active, progressive, far-advanced disease
• nevertheless, many of the principles of palliative care are appropriate to the management of patients incapacitated by their disease

Should a Palliative Care service provide care for the elderly?

No, although their care is important.

• many patients needing palliative care are elderly but they need palliative care because of the underlying disease from which they are suffering, not because of their age
• nevertheless, many of the principles of palliative care are appropriate to the management of the elderly

Is Palliative Care just Terminal Care?

No.

• the provision of high quality care during the final days and hours of life is an important part of palliative care
• palliative care should be initiated when the patient becomes symptomatic of their active, progressive, far-advanced disease and should never be withheld until such time as all treatment alternatives for the underlying disease have been exhausted

.

Should Palliative Care stay separate from mainstream medicine?

No.

• palliative care originated because of the belief that terminally ill patients were not receiving optimal care and there was for a long time mutual distrust between the practitioners of palliative care and orthodox medicine
• modern palliative care should be integrated into mainstream medicine
• it provides active and holistic care that is complementary to the active treatment of the underlying disease
• it will foster palliative care skills for other health care professionals, particularly better pain and symptom control and appreciation of the psychosocial aspects of care

.

Is Palliative Care not just ‘old-fashioned’ care?

No.

• palliative care was originally separate from mainstream medicine, and was frequently practised by very caring individuals who knew little about medicine
• modern palliative care is more integrated with other health care systems and calls for highly trained doctors and nurses, competent in a range of medical disciplines including internal medicine, pharmacology, communications skills, oncology and psychotherapy

Is Palliative Care what you do when "nothing more can be done"?

No.

• no patient should ever be told "there is nothing more that can be done"—it is never true and may be seen as abandonment of care
• it may be permissible to say there is no treatment available to stop the progression of the underlying disease, but it is always possible to provide care and good symptom control

.

Does Palliative Care include euthanasia and physician-assisted suicide?

No.

• a request for euthanasia or assisted suicide is usually a plea for better care
• depression and psychosocial problems are frequent in patients making requests
• unrelieved or intolerable physical or psychosocial suffering should be infrequent if patients have access to modern interprofessional palliative care
• terminally ill patients suffering intractable symptoms can be treated by sedation; this does not constitute euthanasia or physician-assisted suicide

.

THE NEED FOR PALLIATIVE CARE

• fifty-two million people die each year
• it is estimated that tens of millions of people die with unrelieved suffering
• about five million people die of cancer each year, to which can be added the numbers of patients dying with AIDS and other diseases who might benefit from palliative care
• that many people die with unnecessary or untreated suffering has been well documented in many studies and published in hundreds of scientific papers and reports
• in developed and developing countries alike, people are living and dying

• in unrelieved pain
• with uncontrolled physical symptoms
• with unresolved psychosocial and spiritual problems
• in fear and loneliness

• this is the suffering that could be helped or prevented with palliative care
• the World Health Organisation (1990) and the Barcelona (1996) declarations both called for palliative care to be to be included in every country’s health services
• the relief of suffering is an ethical imperative
• every patient with an active, progressive, far-advanced illness has a right to palliative care
• every doctor and nurse has a responsibility to employ the principles of palliative care in the care of these patients

.

.

THE GOALS OF PALLIATIVE CARE

For patients with active, progressive, far-advanced disease, the goals of palliative care are

• to provide relief from pain and other physical symptoms
• to maximise the quality of life
• to provide psychosocial and spiritual care
• to provide support to help the family during the patient’s illness and bereavement

.

PALLIATIVE CARE AND SUFFERING: INTERPROFESSIONAL CARE

Suffering may be defined as the distress associated with events that threaten the intactness or wholeness of the person.

In clinical practice, it is helpful to have a simple classification of the causes of suffering, so that the complex problems presented by patients can be disentangled, in order to provide comprehensive palliation and relief of suffering:

• Pain
• Other physical symptoms
• Psychological
• Social
• Cultural
• Spiritual

The components of palliative care, or the aspects of care and treatment that need to be addressed, follow logically from the causes of suffering. Each has to be addressed in the provision of comprehensive palliative care, making a multidisciplinary approach to care a necessity.

.

Treatment of pain and physical symptoms are addressed first because it is not possible to deal with the psychosocial aspects of care if the patient has unrelieved pain or other distressing physical symptoms.

The various causes of suffering are interdependent and unrecognized or unresolved problems relating to one cause may cause or exacerbate other aspects of suffering

• unrelieved pain can cause or aggravate psychosocial problems

• these psychosocial components of suffering will not be treated successfully until the pain is relieved

• pain may be aggravated by unrecognized or untreated psychosocial problems

• no amount of well prescribed analgesia will relieve the patient’s pain until the psychosocial problems are addressed

A multidisciplinary approach to assessment and treatment is mandatory

• failure to do this often results in unrelieved pain and unrelieved psychosocial suffering

.

MULTIDISCIPLINARY and INTERPROFESSIONAL TEAMS

Successful palliative care requires attention to all aspects of a patient’s suffering, which requires input or assistance from a range of medical, nursing and allied health personnel—a multidisciplinary approach.

.

Established palliative care services work as a multidisciplinary or interprofessional team

• multidisciplinary is the term that used to be applied to palliative care teams, but if the individuals work independently and there are no regular team meetings, patient care may become fragmented and conflicting information given to patients and families
• interprofessional is the term now used for teams that meet on a regular basis to discuss patient care and develop a unified plan of management for each patient, and provide support for other members of the team
• where palliative care services have not yet been established, it is important for the few professionals providing such care to work as a team, meeting regularly, planning and reviewing care, and supporting each other

.

The patient may be considered a ‘member’ of the team (although they do not participate in team meetings), as all treatment must be with their consent and in accordance with their wishes

.

The members of the patient’s family can be considered ‘members’, as they have an important role in the patient’s overall care and their opinions should be included when formulating a plan of management

.

Volunteers play an important role in many palliative care services

The ideal multidisciplinary team

.

PRINCIPLES OF PALLIATIVE CARE

• Palliative care incorporates the whole spectrum of care—medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.
• The principles of palliative care might simply be regarded as those of good medical practice

.

A caring attitude

• involves sensitivity, empathy and compassion, and demonstrates concern for the individual
• there is concern for all aspects of a patient’s suffering, not just the medical problems
• there is a non-judgmental approach in which personality, intellect, ethnic origin, religious belief or any other individual factors do not prejudice the delivery of optimal care

Consideration of individuality

• the practice of categorizing patients by their underlying disease, based on the similarity of the medical problems encountered, fails to recognize the psychosocial features and problems that make every patient a unique individual
• these unique characteristics can greatly influence suffering and need to be taken into account when planning the palliative care for individual patients

Cultural considerations

• ethnic, racial, religious and other cultural factors may have a profound effect on a patient’s suffering
• cultural differences are to be respected and treatment planned in a culturally sensitive manner

Consent

• the consent of a patient, or those to whom the responsibility is delegated, is necessary before any treatment is given or withdrawn
• the majority of patients want shared decision making although physicians tend to underestimate this
• having assessed what treatment is appropriate or inappropriate, this is discussed with the patient
• in most instances, adequately informed patients will accept the recommendations made

Choice of site of care

• the patient and family need to be included in any discussion about the site of care
• patients with a terminal illness should be managed at home whenever possible

Communication

• good communication between all the health care professionals involved in a patient’s care is essential and is fundamental to many aspects of palliative care
• good communication with patients and families is also essential

Clinical context: Appropriate treatment

• all palliative treatment should be appropriate to the stage of the patient’s disease and the prognosis
• over-enthusiastic therapy that is inappropriate and patient neglect are equally deplorable
• palliative care has been accused of the medicalization of death, and care must be taken to balance technical interventions with a humanistic orientation to dying patients
• the prescription of appropriate treatment is particularly important in palliative care because of the unnecessary additional suffering that may be caused by inappropriately active therapy or by lack of treatment
• see Ethical issues
• when palliative care includes active therapy for the underlying disease, limits should be observed, appropriate to the patient’s condition and prognosis

• treatment known to be futile, given because ‘you have to do something’, is unethical

• where only symptomatic and supportive palliative measures are employed, all efforts are directed at the relief of suffering and the quality of life, and not necessarily at the prolongation of life

Comprehensive interprofessional care

• the provision of total or comprehensive care for all aspects of a patient’s suffering requires an interdisciplinary team

Care excellence

• palliative care should deliver the best possible medical, nursing and allied health care that is available and appropriate

Consistent medical care

• consistent medical management requires that an overall plan of care be established, and regularly reviewed, for each patient
• this will reduce the likelihood of sudden or unexpected alterations, which can be distressing for the patient and family

Coordinated care

• involves the effective organization of the work of the members of the interprofessional team, to provide maximal support and care to the patient and family
• care planning meetings, to which all members of the team can contribute, and at which the views of the patient and the family are presented, are used to develop a plan of care for each individual patient

Continuity of care

• the provision of continuous symptomatic and supportive care from the time the patient is first referred until death is basic to the aims of palliative care
• problems most frequently arise when patients are moved from one place of care to another and ensuring continuity of all aspects of care is most important

Crisis prevention

• good palliative care involves careful planning to prevent the physical and emotional crises that occur with progressive disease
• many of the clinical problems can be anticipated and some can be prevented by appropriate management
• patients and their families should be forewarned of likely problems, and contingency plans made to minimize physical and emotional distress

Caregiver support

• the relatives of patients with advanced disease are subject to considerable emotional and physical distress, especially if the patient is being managed at home
• particular attention must be paid to their needs as the success or failure of palliative care may depend on the caregivers’ ability to cope

Continued reassessment

• is a necessity for all patients with advanced disease for whom increasing and new clinical problems are to be expected
• this applies as much to psychosocial issues as it does to pain and other physical symptoms

Advance Care Planning

see Advance Care Planning

.

COMMUNICATION WITH PATIENTS

Important and potentially difficult discussions are frequently necessary with palliative care patients who have active, progressive, far-advanced disease, regarding

• breaking bad news
• further treatment directed at the underlying disease
• communicating prognoses
• admission to a palliative care program
• artificial nutrition
• artificial hydration
• medications such as antibiotics
• do-not-resuscitate orders

Decisions must be individualised for each patient and should be made in discussion with the patient and family. The following guide is to help you plan for and hold such discussions.

BEFORE THE DISCUSSION

Ask yourself these questions

Would you be surprised if this patient died of their disease within 6 months?

• This may provide a better guide for decision-making, as attempting to prognosticate may be difficult and inaccurate.
• Alternatively, assess how much the patient’s condition has deteriorated in the last month or six weeks, using observations by the team and objective measures such as x-rays and biochemistry.

What specific therapies are available to treat the underlying disease?

• What are the percentage chances of significant clinical improvement? __%
• Does that take into account the patient’s age and any other diseases/co-morbidities?
• How long would the improvement last? Days, weeks or months?
• What are the percentage chances of serious adverse effects? __%
• Does that take into account the patient’s age and any other diseases/co-morbidities?
• On balance, do the potential benefits outweigh the potential burdens?

About the Patient and Family

• What is their understanding of the state of the disease and the prognosis?
• Do they understand the goal of any treatments to be discussed (i.e. palliative, not curative)?
• Do they understand the potential benefits and burdens of the treatment options?
• What are their expectations? What are they hoping for?
• What do you think their preferences are?

.

THE DISCUSSION

Appropriate setting

• Discussions should be held in person and not by telephone, except when face-to-face meetings are not possible for geographic reasons
• Privacy, prevent interruptions (leave your pager/mobile with someone else)
• Sitting down (not standing over the patient’s bed)
• Allow enough time
• The patient has at least one family member or friend for support

Introduce the discussion

• e.g. We need to talk about your current problems and our goals for your care

Find out what they understand

• e.g. Tell me what you understand about your illness at the moment

Find out what they expect

• e.g. Tell me what you see happening with this illness in the future
• e.g. Tell me what things are important for you

Provide medical information, if necessary

• in a caring and sympathetic way, not abruptly or bluntly
• in a way they can understand
• clearly (avoid euphemisms and medical jargon)
• the medical situation

• what treatments can be offered
• the possible benefits and adverse effects of any treatments
• as much or as little information as they want (if unsure, ask them how much they want)
• use trained interpreters

Discuss realistic possibilities in the context of their view of the present and future

.

• Discussing further active treatment for the underlying disease

• truthful discussion of what therapy is or is not available
• the benefits and burdens of any therapies
• do NOT say ‘there is nothing more that can be done’

• patients interpret this to mean no treatment for anything
• it is never true
• patients and families will feel abandoned

• patients may be told there is no further therapy for the underlying disease, but the provision of continuing care and symptom control should be stressed
• if further active therapy for the underlying disease is not appropriate, emphasise the positive aspects of symptomatic and supportive palliative care

• Discussing prognoses

• Explain the uncertainty in estimating an individual patient’s prognosis
• Avoid precise prognostication
• Give a realistic time range
• Provide realistic hope—helping them to achieve what is important for them
• Recommend that family relationships and worldly affairs be attended to
• Be prepared to answer questions about the process of dying
• Provide on-going support and counselling
• Reassure about continuity of care

• Discussing admission to palliative care

• discuss palliative care in the context of how it can help them achieve their goals
• e.g. You have told me you would like to…………..Palliative care may be able to help you achieve what you want
• emphasize the positive aspects of palliative care
• e.g. living as well as possible, for as long as possible; not ‘giving up’

• Discussing appropriate medical care

• Issues related to the appropriateness of artificial hydration and nutrition, antibiotics and other medications are dealt with in the section on Ethical Issues
• Explain the possible benefits and burdens (or futility) of any intervention
• If agreement is not reached, the intervention can be trialled for a specified time

• Discussing ‘Do-not-resuscitate’ orders

• Introduce the discussion
• e.g. We need to discuss something we discuss with all patients admitted to the hospital
• Find out what the patient understands
• e.g. What do you understand about your current medical problems?
• Find out what the patient expects, what their goals are
• e.g. What do you see happening in the future?
• Discuss a DNR order in the context of the patient’s view of their future
• e.g. You have told me you would like……so CPR would not seem appropriate if you died
• If necessary, discuss
• futility of CPR (chances of surviving to discharge)
• indignity of CPR
• being on a respirator in ICU and unable to communicate
• Respond sympathetically to emotional reactions
• Reassure patient that all other medical care will continue
• If a patient clearly understands that they are dying and that the only care that they will receive is directed to their comfort, it may not be necessary to discuss DNR orders. If this is the case, it must be recorded in case-notes.

Respond sympathetically to emotional reactions

Agree on a plan, with provision that it can be modified if circumstances change

• Offer to document the plan, including appointing an agent and regarding resuscitation

Remember, death is the natural end to life and is not a failure of medicine

.

ADVANCE CARE PLANNING

Advance care planning is a means for patients to record their end-of-life values and preferences, including their wishes regarding future treatments (or avoidance of them)

.

Advance care planning involves a number of processes

• informing the patient
• eliciting preferences
• identifying a surrogate decision maker to act if the patient is no longer able to make decisions about their own care
• it involves discussions with family members, or at least with the person who is to be the surrogate decision maker

.

The principle of advance care planning is not new

• it is common for patients aware of approaching death to discuss with their carers how they wish to be treated
• however, these wishes have not always been respected, especially

• if the patient is urgently taken to hospital
• if there is disagreement amongst family members about what is appropriate treatment

.

The ‘Respecting Choices’ program developed in Wisconsin is an example of advance care planning

• employs trained personnel to facilitate the discussions and record the outcomes, which are in writing and signed, and kept in the front of the patient’s file
• the surrogate decision maker is involved in the discussions so that they have explicit knowledge of the patient’s wishes; otherwise they may feel burdened by the responsibility
• there is less conflict between patients and their families if advance care planning has been discussed

.

MODELS OF CARE

.

• 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 developing 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

.

Types of Care: the meaning of "Palliative"

.

It is important to differentiate

• palliative care principles which apply to all care, whatever the disease suffered by a patient
• palliative techniques or therapies include medical and surgical therapies (e.g. stenting, paracentesis, internal fixation of fractures and radiotherapy) that are employed to palliate symptoms and ease suffering but are only a small part of the spectrum of care known as palliative care
• specialist palliative care in some countries is practised in units operated exclusively for palliative care by doctors and nurses who are accredited specialists in palliative care. Whether such specialisation is important or essential is something that can only be debated in the context of national needs and resources.

.

Models of Care

Palliative Care Services operate in one or more of the following ways, reflecting local practice and needs, but there is no ‘right’ or ‘wrong’ type of service.

In-patient beds

• an in-patient palliative care unit may be part of a hospital or an independent free-standing unit
• a hospital unit may be either a special ward within the hospital or a separate unit built in the hospital grounds
• a free-standing unit is physically separate from the hospital, but should still be able to access its staff and services
• patients may be admitted for
• symptom management (physical or psychosocial)
• terminal care
• short duration rehabilitation/convalescence
• to provide a period of respite for family carers
• in the UK, most units have few beds (6-30), an average length of stay of 2 weeks or less, and a discharge rate of 40-60%
• these figures vary greatly around the world and depend on local needs and resources, the relationship to other services

Community services

• there are various models for community based palliative care services
• services providing specialist advice and support for the family doctors and community nurses managing the patients
• services providing ‘hands-on’ nursing and allied health services to patients at home, in co-operation with the patients own doctor
• comprehensive services providing medical, nursing and allied health care to patients and their families at home

Day Units

• known as Day Care, Day Hospice, Day Palliative Care Unit
• usually form part of a hospital or in-patient palliative care unit
• provide care, rehabilitation, support and respite during the day for people under care at home, who are still well enough to be transported to and from the Day Care Unit, often by volunteer transport

Hospital Palliative Care Teams

• operate in general and specialist hospitals
• are staffed by doctors and palliative care nurses
• some also have a social worker or a pastoral care specialist
• provide consultative advice on patients referred to them in any department of the hospital
• to advise on every aspect of palliation
• provide support for family member
• provide support and education for the staff
• facilitates the provision of high quality palliative care in all wards
• where the patient is familiar with the staff and surroundings
• without the need to be transferred to another unit
• educates the ward staff about matters pertaining to palliative care

.

INTEGRATION of PALLIATIVE CARE into CLINICAL CARE

Many health care workers believe that palliative care is the ‘soft option’ adopted when ‘active’ therapy stops

• palliative care, addressing all the patient’s physical and psychosocial problems, is active therapy

Palliative care has in the past been regarded as the care employed when all avenues of treatment for the underlying disease are exhausted and further active medical treatment considered inappropriate:

.

.

Palliative care should be initiated when a patient becomes symptomatic of active, progressive, incurable disease

• it should never be withheld until such time as all modalities of treatment of the underlying disease have been exhausted
• it is active therapy that is complementary to active treatment of the underlying disease
• It should be integrated in a seamless manner with other aspects of care
• a holistic approach to care, encompassing all aspects of a patient’s suffering and which is a prerequisite for successful palliative care, is often lacking in modern disease-orientated medicine

.

.

The diagrams on this page are reproduced with permission from
Woodruff R. Palliative Medicine. 4th edition. Oxford University Press, 2004

.

BARRIERS to PALLIATIVE CARE

Many patients with advanced disease do not receive palliative care

• some are referred too late in the course of their disease to benefit from treatment.

The reasons for this may relate to the physician, the patient, or to social factors.

.

NEXT >> ETHICS

TOP OF PAGE

TABLE OF CONTENTS

©2008 Published by IAHPC Press