palliative care

PALLIATIVE CARE

MRS. GRACE LYDIAASST.PROFESSOR

OACN

INTRODUCTION

Palliative care is developing as an areas of special clinical competence throughout the world. The modern hospice is a relatively recent concept that originated and gained momentum in the United kingdom after the founding of St. Christopher’s hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of modern hospice movement.

• Palliative medicine has been recognized as a specialty in UK since 1987, in Australia and New Zeland since 1988. and more recently in Canada.

Definition of palliative care

• Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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.

-WHO 2002

• ‘to mitigate the sufferings of the patient, not to effect a cure’(Macpherson, 2002).

• Palliative care aims to relieve symptoms and improve the quality of living and dying for a person and/or family living with a life threatening illness.

• Palliative care strives to help individuals and their families:

· address physical, psychological, social, spiritual and practical issues and associated expectations, needs, hopes and fears,

· prepare for, and manage, life closure and the dying process, and

· cope with loss and grief during the illness and bereavement.

02/05/23 Free PowerPoint Template from www.brainybetty.com 7

• The National Council for Palliative Care, which is an umbrella organisation for setting standards in specialist palliative care in the UK, published its current definition in 2002 NCPC definition of palliative care

• Palliative care:• Affirms life and dying as a normal

process;• Provides relief from pain and other

symptoms;

http://www.ncpc.org.uk/

• 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 environment.

• Source: National Council for Palliative Care (2002)


Palliative care…..

• Palliative care may: complement and enhance treatment of

the disease at anytime during the disease trajectory, or become the total focus of care.Palliative care may be provided to individuals:

· with any diagnosis · regardless of age, and · when they have unmet needs and

are prepared to accept care.

TERMINOLOGIES

• Autonomy – “the state of being self-governed” (CPCA, 2001).

• Thinking and acting independently without outside influence and direction.

• Bereavement – “the state of having suffered the death of someone significant” (CPCA,2001)

• Caregiver – “anyone who provides care.• Care givers are people who are willing

to listen to ill persons and responds to their individual experiences (Twycross R 2003).

• Formal caregivers are members of an organization and accountable to defined norms of conduct and practice. They may be professionals, support workers, or volunteers.

• Informal caregivers are not members of an organization. They [usually] do not have formal training, and are not accountable to norms of conduct or practice. They may be family members or friends” (CPCA, 2001).


• Dignity – To treat individuals with respect, esteem and regard

• Family – Whomever the person says is his or her family. The family may include relatives,

partners, friends and pets.• Grief – Reactions (physical, emotional,

behavioral, spiritual) experienced in anticipation of, during and after a loss.

• Needs – Issues that patients and caregivers mutually agree require attention in the plan of care.

NEED OF PALLIATIVE CARE• Cancer burden: global picture.• Number of new cancer cases (in millions)a 2000 2020 2050• World 10.6 15.3 23.8• Developing countries 5.4 9.3 17.0• Developed countries 4.6 6.0 6.8• Parkin, D.M., Bray, F.I., and Devesa, S.S. (2001). Cancer burden in the year 2000.

The global picture. European Journal of Cancer 37, 4–66.

ESTIMATION

• One million cases of cancer occur each year in India, with over 80% presenting at stage III and IV. Two thirds of patients with cancer are incurable need palliative care and approximately one million people are experiencing cancer pain every year.

• Acc to WHO, more than four million cancer patients would benefit from palliative care. Less than one percent of those who need palliative care services have access to such services in India.

NEED OF PALLIATIVE CARE

• Size of problem. Estimated number of• people who would need palliative care (in

millions)• Annual deaths globally 56• Annual deaths in developing countries 44• Annual deaths in developed countries 12• Estimated numbers needing palliative carea

33• It can be estimated that approximately 60%

of the dying need

NEED OF PALLIATIVE CARE

Since death also affects family members andclose companions, perhaps one to two persons giving care and support for every one who dies, then a conservative figure might be 100 million people who would benefit from the availability of basic palliative care.

Milestones in palliative care in India

• 1986 - First hospice care- “Shanti Avedana Ashram” – at Mumbai.

• 1990 - Cancer Relief India (CRI) a UK charity founded - provide education to doctors and nurses in palliative care and providing pain and symptom relief for cancer patients.

• 1994 – Pain and palliative clinic at Calicut.• 1994- Indian association of Palliative care

with WHO and Govt of India - aim is to propagating palliative care in India along with facilitating education initiatives and drug availability.

Milestones…..• 1993-95- CRI and Cancer Relief Macmillan Fund

with WHO facilitated training of doctors and nurses in palliative care.

• 1997- Can support, Delhi .(first palliative care home in north India)

• 1999- first nurse from India sponsored by CRI to complete the diploma in palliative nursing at Oxford Brookes University.

• 2001- Neighborhood Netwrok in Palliative care (NNPC) has a network of 150 such clinic supported by 10,000 trained volunteers, 85 doctors and 270 nurses looking after about 25,000 patients at any point.

Milestones…..• 2001- Guwahati Pain and palliative care

Society.• 2008- first palliative care policy in Kerala.

The policy emphasis the community based approach to palliative care and considers home based care as the corner stone of the palliative care services.

Psycho oncology in India- integrated services linking training, clinical services and research activities which are linked at several levels involving volunteers in the community.

• The word ‘palliative’ has its origins in the Latin word ‘pallium’ meaning to cloak or cover. In the context of how cancer was perceived and poorly diagnosed from the middle ages until perhaps the latter half of the 20th century, it is an appropriate description. Even today, there are many cancers that grow unseen and without symptoms for a considerable time before the person seeks help.

• The term "palliative care" is increasingly used with regard to diseases other than cancer such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure, HIV/AIDS, and progressive neurological conditions.

http://en.wikipedia.org/wiki/Cancer

http://en.wikipedia.org/wiki/Renal_disease

http://en.wikipedia.org/wiki/Chronic_heart_failure

http://en.wikipedia.org/wiki/Neurology

• Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Philosophy of Palliative Care

• “To give people with life limiting illnesses a reason to hope and a feeling of greater self-confidence and dignity.

• We embrace a holistic approach to care giving, which respects the dignity and worth of each person.

• We believe in creating an environment that nurtures the physical, intellectual, social and spiritual wellbeing of those in our care”.

Philosophy….

• Palliative, or comfort care, recognizes that death is a normal part of life and strives to prepare patients and their families so we can all die on our own terms.

• From the start of a serious or terminal illness, practitioners reduce the burden on family caregivers by identifying and providing for the needs of you and your family.

• These needs may be physical, emotional, social or spiritual.


PHILOSOPHY OF PALLIATIVE CARE

• The Canadian Palliative Care Association (2001)Proposed Norms of Practice for Hospice Palliative Care:We believe

• Access is Foundational - Palliative care services should be available to all who require care.

• Care is Patient-Focused – Palliative cares strives to meet the physical, psychological, spiritual and social needs of patients and families.

• It is sensitive to personal, cultural and religious values, beliefs and practices, developmental state,and readiness to deal with the dying process


Philosophy……• People Have the Right To Choice - Each person is an

autonomous and unique individual with the right to participate in informed discussion related to care and to choose the best possible options and outcomes based on that information.

• Dying is Part of Life – Palliative care affirms life. Euthanasia and physician assisted suicide are not considered options. Palliative care never intentionally hastens death.

• Quality of Life Guides Decisions – Care choices should be guided by quality of life as defined by the patient.

Philosophy…….

• Team Work Is Essential – Palliative care is a network of services most effectively delivered by an interdisciplinary team who rely on shared knowledge, expertise and effective interactions.

• Service is Coordinated – A palliative care program should promote continuity of care across settings and coordination amongst all involved caregivers and programs/services.

• Accountability is Demonstrated Through Outcomes- We are accountable to ourselves, each other, to our individual sites, to the regional program and to the public we serve. Accountability is demonstrated through measurable goals.

Philosophy…..

• Confidentiality is Central – Patient information is treated with the utmost respect. Team members must adhere to this principle.

• Care Setting Is Important – Palliative care is provided in a patient and family focused environment in the most appropriate care setting such as the home, hospice, continuing care centers, acute hospitals or on a tertiary palliative care unit. The needs and preferences of the patient and family, as well as the resources available, are taken into consideration.

Philosophy……

• Caregiver Well-Being Is Fundamental – The provision of ongoing support to enhance formal and informal caregivers‛ well-being is integral to a successful palliative care program.

• On-going Education is Essential – Patient, family, caregiver and public education is important to the maintenance and enhancement of the quality of palliative care.

• Research Leads to Advancement in Care – The development, dissemination and integration of research are critical to palliative care.

• Resources Influence Program Quality – Adequate resources, responsibly managed, are imperative to maintain and advance palliative care programming.

• Collaborative Leadership is Advantageous- The development and maintenance


SCOPE

• Palliative care is the specialized medical care for people with serious illness.

• provides relief from pain, shortness of breath, nausea and other distressing symptoms;

• affirms life and regards dying as a normal process;

• intends neither to hasten nor to postpone death;

• integrates the psychological and spiritual aspects of patient care;


• offers a support system to help patients live as actively as possible;

• offers a support system to help the family cope;

• uses a team approach to address the needs of patients and their families;

• will enhance quality of life;• 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.


Main aims

Avoid the avoidable suffering

Building Capacity : empowerment to adjust, relief and support the unavoidable suffering

Wellbeing

Promote comfort

Improve the Quality of Life

Comprehensive Care

OMS 2002

Values

AIMS AND PRINCIPLES OF PALLIATIVE CARE

• Respect the likes and dislikes, goals choices of the dying person .

• Integrates the psychological and spiritual aspects of patient care.

• Offers a support system to help patients live as actively as possible until death.

• Patient centered rather than disease focused.• Concerned with healing rather than curing.• Affirms life & regards dying as normal

process i.e as a part of the life cycle.

Principles….

• Builds ways to provide excellent care at the end of the life.

through education of care providers, appropriate health policies and adequate funding from insurers and the governemnt.

• Provides relief from pain and other distressing symptoms.

• Death accepting but also life enhancing.• Intends neither to hasten nor post pone

death.

• Adds life to days and not days to life.• Partnership between the patient and the

care providers.• Supports the need of the family members• Helps then in gaining access to needed

health care providers & appropriate care settings. Involving various kinds of trained providers in different setting tailored to the needs of the patient and his or her family.


• Offers support system to help the family to cope during the patients illness and in their own bereavement, including the needs of children.

• Uses a team approach to address the needs of patients and their families including bereavement, counseling, if indicated.

• Enhance the quality of life, may also positively influence the course of a patients illness.

• Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.

• It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

• Health providers must evaluate and alleviate a child's physical, psychological, and social distress.

• Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

• It can be provided in tertiary care facilities, in community health centres and even in children's homes.


• Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

• The core team includes doctor, nurse and social work palliative care specialists. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team.

Goals of palliative care

• Achievement of the best possible quality of life for patients and their families regardless of the stage of the disease or the need for other therapies.

• Three essential component of palliative care:Hope

Honestyopenness

Symptom relief

Psychological support

Team work and partnership

• Palliative care is still sometimes defined as solely being for people with cancer, but palliative care is more often now defined as being for people facing a life-threatening illness. Palliative care is not usually defined as being for people with chronic diseases such as diabetes.

PALLIATIVE CARE MODEL

• TRADITIONAL MODEL:

TREATMENT

PALLIATIVE CARE

ADVANCED DISEASE

DIAGNOSIS

TIME COURSE OF ILLNESS

Cure/Life-prolongingIntent

Palliative/Comfort Intent

DEATH

“Active Treatment”

PalliativeCare

DEATH

EVOLVING MODEL OF PALLIATIVE CARE

EVOLVING MODEL OF PALLIATIVE CARE

Death

Modified palliative care model

• Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by improving communication so that you can better understand your choices for treatment.

A palliative approach

• Aims:- to improve the quality of life for

individuals with a life-limiting illness and their families, by reducing their suffering

through early identification, assessment and treatment of pain, physical, cultural, psychological, social and spiritual needs

Myths about palliative care

• Residents will become addicted to pain relief drugs.

• The palliative approach is only provided in hospital type settings

• You need to be an expert to be able to provide the care

• You need to be a nurse to be able to provide the care

• Applying the palliative approach will increase the care worker’s work load

• The palliative approach is only provided to residents with cancer

• The palliative approach costs more.

PC team…

• Potential members of the interdisciplinary team for a palliative approach may include but not be limited to

• Care assistants• General Practitioners• Generalist nurses•Specialist nurses• Aboriginal health workers• Trained volunteers and their

coordinators• Pharmacists• Chaplains/pastoral care

workers

Recreation activity officers• Pain specialists• Allied health practitioners• Specialist physicians• Community/palliative

services• Psychologists/psychiatrists• Specialist palliative service

providers• Managers.• Home attendants• Physical, occupational, art,

play, music therapist.• Bereavement coordinators.

SERVICES PROVIDED BY PALLIATIVE CARE

• Interdisciplinary team care- nursing serices, medical, social, pastoral counseling, home health aide.

• Bereavement counseling• Dietary counseling• Physical therapy• Occupational therapy• Speech therapy• Investigations and drugs• Durable medical equipments and supplies.

Palliative Care Patient Support Services

Three categories of support:

1. Pain management is vital for comfort and to reduce patients’ distress. Health care professionals and families can collaborate to identify the sources of pain and relieve them with drugs and other forms of therapy.


2. Symptom management involves treating symptoms other than pain such as nausea, weakness, bowel and bladder problems, mental confusion, fatigue, and difficulty breathing


3. Emotional and spiritual support is important for both the patient and family in dealing with the emotional demands of critical illness.

ELEMENTS OF PALLIATIVE CARE

1.PRIMARY GOAL:The primary goal is to prevent and

relieve sufferings imposed by disease and their treatment, achievement of best possible quality of life for patients and their families regardless of the stage of the disease or need for other therapies.

Elements…

2.PATIENT POPULATION:Patients of all ages experiencing a

debilitating chronic or life threatening illness, condition or injury.

3.PATIENT AND FAMILY CENTERED CARE:The uniqueness of each patient and family

is respected. The patient family constitute the unit of care.

4.TIMING OF PALLIATIVE CARE:It ideally begins at the time of diagnosis of

a life threatening or debilitating condition and continues through cure, or until death and into the family’s bereavement period.

Elements…..

5.COMPREHENSIVE CARE:Palliative care employs multidimensional

assessment to identify and relieve sufferings through the prevention or alleviation of physical, psychological, social and spiritual distress.

6.INTERDISCIPLINARY TEAM:Team work is an integral part of the

philosophy of palliative care. Require the expertise of various providers in order to adequately assess and treat the complex needs of seriously ill patients and their families.

Elements….7. COMMUNICATION SKILLS:

Effective communication skills are requisite in palliative care. These includes appropriate and effective sharing of information, active listening, determination of goals and preferences, assistance with medical decision making, and effective communication with all individuals involved in the care of patients and their families.

Elements….

8. SKILL IN CARE OF THE DYING AND BEREAVED:

Team must be knowledgeable and skilled in providing care for the dying and the bereaved.

9.CONTINUITY OF CARE ACROSS SETTINGS:Palliative care is integral to all health care

delivery system settings (hospital, emergency dept, nursing homes, home care, assisted living facilities, outpatient and non traditional environments such as schools. The palliative care team collaborates with professional and informal care givers in each of these settings.

Elements….

10. EQUITABLE ACCESS:Palliative care teams should work toward

equitable access to palliative care across all ages and patient populations, all diagnostic categories, all health care settings including rural communities, and regardless of race, ethnicity, sexual preferences or ability to pay.

11. QUALITY IMPROVEMENT:Palliative care services are committed to

the pursuit of excellence and high quality of care which enhances the quality of life.

Benefits of PC

• palliative approach offers many benefits to the residents, their families and the health care team.

• Some of these are:• reducing potential distress to residents and their

families caused by a transfer to an acute care setting• reducing the admission and/or transfer of

residents to acute care facilities as care staff develop the skills to manage the palliative care residents

• increasing the involvement of the resident and their family in the decision making about their care

• encouraging open and early discussion on death and dying

• allowing for advance care planning• providing opportunities, especially for

improved control of pain symptoms, in a setting that is familiar to the resident

• offering the resident and family consistent and continuous care

Approaches to Palliative Care

• Not a “one size fits all approach” • Care is tailored to help the specific needs

of the patient• Since palliative care is utilized to help with

various diseases, the care provided must fit the symptoms.

Image courtesy of uwhealth.org

What does Palliative Care Provide to the Patient?

• Helps patients gain the strength and peace of mind to carry on with daily life

• Aid the ability to tolerate medical treatments

• Helps patients to better understand their choices for care

PALLIATIVE CARE NURSING

SPRITUAL

PHYSICAL

EMOTIONALAL

SOCIALL

PALLIATIVE CARE NURSING

• Reflects whole aspects care. It combines the humanistic approach with a scientific approach.

• Physical wellbeing: Free of pain and discomfort, functional ability etc.,

• Psychological well being: free from anxiety/fears, ability to experience happiness etc.,

• Social well being: Purposeful life role, free from financial burden.

• Spiritual well being: feelings of hope, meaning to life.

Physical needs

• Palliative care professionals provide highly skilled management of pain and other symptoms such as anxiety, constipation, nausea, breathing difficulties and confusion.

• They also help patients and families cope with common changes such as loss of appetite, weakness, bowel and bladder problems, as well as side effects of therapies.

• Most pain and other symptoms can be managed at home or in hospice. Some treatments may require diagnostic tests that must be done in a hospital.

• A small percentage of patients will need to be admitted to a tertiary palliative care unit for severe and complex symptoms.


http://www.fraserhealth.ca/your_care/hospice_palliative_care/services/services

Emotional and spiritual needs

• The health of the whole person is important in hospice palliative care. Hospice palliative care recognizes emotional and spiritual distress as important sources of suffering requiring support in addition to physical symptoms.

• Care teams offer help with non-physical pain through counseling and spiritual support to manage the emotional, social and spiritual impact

• We also offer a variety of bereavement and counseling services to friends and family members before and after a patient’s death.


PALLIATIVE CARE COMPETENCIES / SKILLS

• Communication skills• Physical skills• Psychosocial skills• Teamwork skills• Intrapersonal skills• Life closure skills

COMMUNICATION SKILLS

The ability• To field and respond to sometimes profound

or rhetorical questions about life and death• To know when to say nothing, because that is

the most appropriate response;• To use therapeutic comforting touch with

confidence;• To challenge colleagues who may wish to

deny patients information; and, perhaps• To discuss the imminent death of a relative

with families

TEAM WORK SKILLS

• The growth of the nursing role within these teams has been dramatic and continues to represent a much admired model of working .

PHYSICAL CARE SKILLS

• The knowledge and skills necessary to deliver active, hands-on care in whatever setting throughout a long period of illness.

• Observational skills and the intuitive ability to recognise signs

• Advising doctors of the appropriate prescription and dosage to manage pain

• The advocacy role nurses have towards patients at a time of extreme vulnerability.

PSYCHOSOCIAL SKILLS

An ability• work with families,• Anticipating their needs,• Putting them in touch with services and• Supporting them when appropriate

INTRAPERSONAL SKILLS

Nurses need to recognise and attempt to understand personal reactions that occur as a natural consequence of working with dying and bereaved people and to be able to reflect on how this affects care given in sensitive situations.

It is the most challenging of all competency areas and plays a significant part in the professional growth of those who choose to work in this field.

LIFE CLOSURE SKILLS

• This area is concerned with nursing behaviours and skills that are crucial to patients’ and families; dignity, as they perceive it, when life is close to an end and thereafter.

• Such care has been described as a sacred work, in which the nurse enters into the patient’s intimate space and touches parts of the body that are usually private

Skills need palliative care nurse

• A committed person:A Nurse stays with the patient or visits the patients many times during the course of the patients illness. She may have to stay with her patient for a long time if it makes the patient as ease. She may have to become a person oriented nurse in order to give holistic care.

A good listener

• Verbal expressions are always heard. Body language tells many things. Activities like sitting alone in an area of significance or using articles of a particular person who passed away tells us that area or the use of that specific article gives him comfort and he is preparing himself for leaving this world.

• Nurse allow them to ventilate their anxiety for coping with the present situation.

A good communicator

• A nurse needs to be honest with the patient about the disease. She needs to answer in simple ways so that the patient and the relatives can understand.

• Your patient may need an extra minute or a comforting word from you which makes a difference. She needs to use right word, in right tome and pitch with the right attitude for reaching out to the patient effectively.

• Acute care nurse plays a pivotal role in clinician - significant others, communication in the acute are settings.

Empathetic to the emotions (of patients and relatives)

• Patient and relatives may shout and scream at you. They may blame God for pain and all difficulties. Palliative care is seen as the end of the road of care. Reacting to their anticipated grief and crisis and helping them appropriately makes to be at ease.

• Families and the patient needs to know the truth as they may need to reorganize and adopt their lives towards the attainment of more achievable goals, realistic hopes and aspirations. (Fallowfield L J et al 2002).

Conti…

• Nurses role was a supportive one with multiple dimensions. Model of the supportive role in palliative care was developed , comprised of six intervoven dimensions. Valuing, connecting, empowering, doing for, finding meaning and preserving own integrity.

Able to understand the pain

• ‘Pain is what the patient says hurts’ (Twycross R 2003). The intensity of pain increases or decreases according to the mood of the patient. It could be acute or chronic. Causes of pain can be due to chemotherapy, constipation, radiation therapy, physical or psychological problems. Pain management in patient includes modifications of the pathological process by giving radiation therapy, chemotherapy or surgery.

• Along with opioids and non opioids are also used. Adjuvant includes corticosteroids, antidepressants, antiepileptic us, muscle relaxants antispasmodics and biphos phonates .

Pain….

• Nurse teach the patient about non drug methods include

• -massage, application of heat pads, acupuncture, relaxation therapy, behavioural therapy can be used to reduce the pain.

Able to recognize associated neuropsychiatry conditions

• Cancer related fatigue, and sleep disturbances must be considered as a clinical syndrome.(Barton Buake 2006).

• Cancer patient with advance disease may prone to delirium, depression, suicidal ideation, and severe anxiety. People who receives systematic cancer treatment were some what impaired in executive function, verbal memory and motor functioning (Nail 2006).one third of cancer population experiences some variety of distress , only about 10% receives any psychosocial therapy (Vanchon M 2006).

Role of nurse in palliative care

• CARING FOR THE PATIENT:1. Direct nursing care2. Meeting physical needs & symptoms management.3. Providing psychological reassurances4. Monitoring & administering pain relief intervention, both

pharmacological and non pharmacological.5. Preventing complications – preventing, monitoring & relieving

discomfort relaxation & contentment & preventing complication.

6. Educating family in basic nursing care.7. Facilitating participation of significant others in patient care.8. Specialized nursing care related to -Lymph edema management - wound care - stoma care - bowel and bladder care.

PALLIATIVE CARE PLAN

Palliative care plan includes

-care goals -symptom management -advance care planning -financial planning -family support -spiritual care -functional status support and rehabilitation -co morbid disease management

Role of nurse in palliative care

1. USE THERAPEUTIC COMMINICATION:- Establish caring and trusting relationship

- Assess the stage, types of the grief, and its signs and symptoms.-provide reassurance and respect- invite the clients to reveal the emotions & consensus of greatest importance to them.-Avoid communication barrier.

2.PROVIDE PSYCHOSOCIAL CARE:They may have anxiety, depression, altered body image, powerlessness, uncertainty and isolation. Provide information that help the client to understand their disease, the benefits and burden of treatment options, and their values and goals to preserve the autonomy of client .

3. Manage the symptoms• Managing the multiple symptoms commonly

experienced by the chronically ill or dying clients remains a primary goal of palliative care nursing.

• Ongoing clinical assessment, reassessing pain and medication side effects, developing pain management expertise and advocating for change if the client does not get relief from the prescribed regimen.

4. Able to understand the personal need of the patient

• Personal hygiene and protection from infections are two major needs of cancer patients.

• Prevention of pressure sore• Nutritional need – consider the taste and

desire to have specific food in consideration.

• Catheter care• Turning patient position freuquently.

5.MAINTAIN A COFORTABLE AND PEACE FULL ENVIRONMENT

• It helps to relax, promote good sleep patterns and minimize symptoms severity.

6.PROMOTE SPIRITUAL COMFORT AND HOPE:-helps the client to make connections to

their spiritual practice or cultural community.- collaborates with the client own

spiritual leaders and community.- demonstrate patience.

7.Protect against abandonment and isolation- answer promptly, if they have doubts.-involving the family members in clients care.

8. Support the grieving family:- provide education and information- inform family members are able to get

way to rest and relax.- provide psychological support

9. Assist with end of life decision making10. Facilitate Mourning

- help them to accept the loss- support efforts to adjust to the loss- encourage establishment of new relationship

- Allow to grieve- Interpret normal behavior- Provide continuous support- Be alert for ineffective coping.


FACILITATORFACILITATOR

CASEMANAGERCASEMANAGER

ADVOCATEADVOCATE

ASSESSMENT ASSESSMENT AND AND MANAGEMENTMANAGEMENT EXPERTEXPERT

PPAALLLLIIAATTIIVVEE

NNUURRSSEESS

RROOLLEE

Palliative care nursing

Doing for

Preserving integrity

empowering

Finding meaning

VALUING

connecting


Connecting • Making a connection

– establishing a rapport– building up trust

• Maintaining a connection– being available, spending time, sharing secrets, sharing

self, maintaining trust.

• Breaking the connection– usually as a result of the patient’s death

Empowering.....• facilitating –

– recognises patient autonomy

• encouraging• defusing

– dealing with negative feelings

• mending – - facilitating healing

• giving information


Doing for...... • Taking charge

– symptom control– making

arrangements• Team playing

– acting as the patient’s advocate

Finding meaning• Focusing on living -

helping the patient to live as fully as possible

• Acknowledging death– giving or reiterating

bad news– talking about death

and the time left

Preserving Integrity

• Confronting own mortality

• Burnout• Supporting

Colleagues

Hope

Comfort

Attachment

Worth

Hope D

iminishing

Hope Sus tain ing

Physical distress Physical Ease

Abandonment

& Isolation

Caring relationships

Feeling devalued Feeling valued

Hope nurturing interventions in palliative care

• ComfortAssessment, psychosocial issues.

• AttachmentBe there, caring environment, promote

communication

• WorthExplore previous experience, future

wishes,enhance independence

The tyrannies of palliative care (Aranda, 2001)

• Niceness

• Glowing testimonial

• Depressing/Sad

• Passive

Care of the family • Including patient & significant others in

decision making r/t patient care.• Attending to their grief, worries, preparing

them for the loss• Communicating with family facilitates to 1. Improve planning & coping.2.Encourage realistic goals & autonomy.3.Reduce uncertainty.4.Maintain trust.

BARRIERS IN AVAILING PALLIATIVE CARE

• Inadequate training of health care personnel in symptom management & other End of life skills.

• Inadequate standards of care• Lack of accountability in the care of dying

patients.• Lack of appropriate information & resources• Lack of investment in research pertaining to

palliative & end of life care.

Barriers….• There are over 135 hospice and palliative

care services in 16 states in India, concentrated in large cities.

• There are 19 states or Union territories in which no palliative care provision was identified.

• Barriers to the development of palliative care include – poverty, population density, geographic distances, opioid availability, work force development and limited national palliative care policy.

Palliative care developments around

the world• The estimated number of persons needing

palliative care is just over 33 million. • Death also affects family members and

with one to two persons shouldering the heavy daily routine of care, this gives a conservative

figure of 100 million people who would benefit by the availability of basic palliative care.

• The rise of hospice and palliative care in its distinctly modern guise (combining clinical care, education, and research) is generally traced to the late 1950s and early 1960s.

• A 1999 listing of palliative care organizations with a global perspective(43) also includes:

• British Aid for Hospices Abroad; • the Hospice Education Institute;• and the WHO Collaborating Centre for

Palliative Cancer Care, Oxford.• Other groups include WHO experts and

international collaborators and WHO collaborating centres in Milan, Saitama, and Wisconsin.

• It is estimated that hospice or palliative care services now exist, or are under development,

on every continent of the world, in around 100 countries. The total number of hospice or palliative care initiatives is in excess of 8000 and these include inpatient units, hospital-based services, community-based teams,

day care centres, and other modes of delivery.

International associations and initiatives in support of

hospice-palliative care

• 1973 - International Association for the Study of Pain, founded

Issaquah, Washington, USA• 1976 - First International Congress on the Care of the

Terminally Ill, Montreal, Canada• 1980 - International Hospice Institute, became International Hospice Institute and College (1995) and International Association for Hospice and Palliative Care (1999)• 1982 - World Health Organization Cancer Pain and Palliative

Care Programme initiated• 1988 - European Association of Palliative Care

International associations and initiatives in support ofhospice-palliative care

• 1990 - Hospice Information Service, founded at St Christopher’s Hospice, London, UK

• 1998 - Poznan Declaration leads to the foundation of the Eastern and Central European Palliative Task Force (1999)

• 1999 - Foundation for Hospices in Sub-Saharan Africa founded in USA

• 2000 - Latin American Association of Palliative Care founded

• 2001 - Asia Pacific Hospice Palliative Care Network founded

• 2002 - UK Forum for Hospice and Palliative Care Worldwide founded by Help the Hospices

Asia Pacific region

• Protocols for the introduction of the WHO three-step analgesic ladder were first introduced in China in 1991, leading to increased opioid use and greater interest in pain and palliative care.

• In Japan, cancer is the principal cause of death, accounting for about 295 000 deaths in 2000.

• The country’s first service for dying people was

organized in the Yodogwa Christian Hospital in 1973;

• In 1979, the Japanese Association for Clinical Research on Death and Dying was established;

• in 1981, the first hospice ward inside a hospital was created;

• by 1993, the Ministry of Health and Welfare had recognized palliative care units in 11 hospitals, with 231 beds in total

Palliative care services in the 14 sectors of the Asia Pacific Hospice Palliative Care Networka

Sector Organizations providing hospice/palliative care (millions)

Population(million)

Estimated annual cancer deaths

Estimated coverage by palliative care services

India 49 1000 ------ ---------

Japan 102 127 295 482 5

Malaysia

30 22 78 25 24

New zeland

42 4 7461 83

Singapore

10 4 4237 66

Taiwan 28 22 32000 5

• India, with one billion inhabitants, contains one-sixth of the world’s population and is a country of striking ethnic, cultural, and religious diversity.

• Around one million new cases of cancer occur each year; and the vast majority are incurable at diagnosis.

• An Indian Association of Palliative Care was formed in 1994 with the support of WHO and by 2000 there were nearly 100 palliative care initiatives across the country.

• A detailed analysis of opioid availability problems in India shows that approximately one million people experience cancer pain in India every year. There was no official source of morphine in India in the 1980s, only ‘pump-priming’ supplies for specific centres and projects, so levels of morphine consumption for pain relief were low.

• By 1997, they reached a low of just 18 kg and per capita consumption ranked 113th among 131 countries around the world.

• There is evidence that governments at many levels (national, provincial,federal, and state) have begun to recognize the importance of pain relief and palliative care through the development of officially formulated policies.

• Palliative care has also been incorporated into several cancer control and some HIV/AIDS programmes.

• Some of these policies have had real impact, others have been ‘paper tigers’ with little effect. Often, failure results from the lack of a comprehensive strategy, for example, omitting the community system.

Example of a suggested essential drug list for palliative care

Analgesics

Non-opioids (mild pain) Acetylsalicylic acid Paracetamol IbuprofenOpioids (mild to moderate pain) CodeineOpioids (moderate to severe pain) Morphine MethadoneOpioid antagonist Naloxone

Corticosteroids Dexametasone PrednisoneLaxatives SennaSodium ducosateMineral oilLactuloseMagnesium hydroxideAppetite PrednisoleBowel obstruction (when surgery not indicated) DimenhydrinateHaloperidolHyoscine butylbromideMetoclopramide

Anxiety, depression, insomnia, psychosis, Amitryptilineepileptic seizures DiazepamLorazepamChlorpromazineHaloperidolPhenytoinSodium valproate

Diarrhoea Codeine phosphateLoperamid

Gastric protection Omeprazol

Fluid retention Furosemide SpironolactoneOral candidiasis Cotrimoxazole Ketoconazole NystatinNausea and vomiting Dimenhydrinate Holoperidol Metoclopramide Prednisolone Prochlorperazine

WHO has produced guidelines for their handling

Any essential drug list for palliative care will include opioid drugs

• Legal issues: doctors, nurses, and pharmacists should be empowered legally to prescribe, dispense, and administer opioids to patients in accordance with their needs.

• Accountability: opioids must be dispensed for medical use only, with responsibility in law.

• Prescription: a prescription for opioids should contain at least the followinginformation: patient’s name, date of prescription, drug name, dosage, strength and form, quantity prescribed,

instructions for use, the doctor’s name and business address, the doctor’s signature.• Accessibility: opioids should be available in locations that will be

accessibleto as many patients as possible.

QUALITY OF LIFE: It is the state of well being that is composite of two components.

1.The ability to perform every day activities that reflect physical, psychological and social well being and

2.Patient satisfaction with level of functioning and control of the disease. It includes like well being, satisfaction, happiness and physical functioning.

Eg. Karnofsky performance status scale is used to assess the functional performance of cancer patients.

ECOG-PS (Eastern co-operative oncology group performance status)

HOSPICE CARE

• Hospice refers to a philosophy of care that seeks to support dignified dying or a good death experience for those with terminal illness. It involves a core inter disciplinary team of professionals and volunteers who provide medical, psychological and spiritual support for the patients and family.

HISTORICAL PERSPECTIVES OF HOSPICE CARE

• The term first developed from the word hospitality by a physician Dame Cicely Saunders in the year 1960 for dying patients, who is the founder of the First modern hospice St.Christopher’s in a residential suburb of London.

• 1969 – Psychiatrist Elizabeth Kubler Ross explained about 5 stages of death in his book “on death and dying” which emphasis the need of death and dying.

• Hospice care is a type of palliative care for people who are in their final weeks or months of life.

• Palliative care is for a person of any age, whether or not his or her illness is terminal. Today, palliative care can help anyone who has a serious illness. Palliative care could help you manage symptoms or side effects of treatment so that you will feel better.

HOW IS PALLIATIVE CARE IS DIFFERENT FROM HOSPICE CARE?

http://www.webmd.com/hw-popup/hospice-care-2611

CRITERIA PALLIATIVE CARE HOSPICE CARE

Who can receive the care?

Any one with a serious illness, regardless of life expectancy, can receive palliative care.

Someone with an illness with a life expectancy measured in months or daysnot years

Need of care You may receive palliative care and curative care at the same time

Treatments and medicines aimed at relieving symptoms are provided by hospice

What organization provides these services?

• Hospitals • Hospices• Nursing Facilities• Health Care Clinics

-Hospice organization- Hospital• Other health care organizations

CRITERIA PALLIATIVE CARE HOSPICE CARE

Where are services provided?

• Home• Assisted living facility• Nursing facility • Hospital

• Usually, wherever the patient resides, in their home, assisted living facility, nursing facility, or hospital• Some hospices have facilities where people can live, like a hospice residence, or receive care for short-term reasons, such as acute pain or symptom management

Who provides these services?

It varies. However usually there is a team including doctors, nurses, social workers and chaplains, similar to the hospice team.

A team—doctor, nurse, social worker, chaplain, volunteer, home health aide and others

palliative care

Healthcare