Palliative Rehabilitation

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Rehabilitation Improves Patient Outcomes:

Chronic pulmonary disease (Lacasse et al 2007)

Cardiac disease (Jolliffe et al 2001)

Degenerative neurological conditions (Khan et al 2007)

Palliative care aims to improve patient outcomes through:

“the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families”

WHO (2002)

Rehabilitation aims to improve patient outcomes by:

maximising patients physical, psychological, social & economic function either through restoration of previously held abilities

AND/ORhelping patients acquire new skills and

behaviours appropriate to a changing health status

Promoting self-management and resilience

(Rankin J 2008)

Function?

What do we understand by the term function? physical, psychological, social, environmental &

economic

What is the impact of symptoms and concerns on function?

Daily Living… what’s important to you?

NICE GUIDANCEImproving Supportive and Palliative Care for Adults with Cancer. The Manual

“Cancer and its treatment can have a major impact on patients’ ability to carry on with their usual daily routines” Ch 10.1

“Cancer rehabilitation attempts to maximise patients’ ability to function, to promote their independence and to help them to adapt to their condition” Ch 10.2

Who provides Palliative Rehabilitation?

DietitianOccupational TherapistPhysiotherapistSpeech & Language TherapistsLymphoedema Specialists

NICE GUIDANCE: Improving Supportive and Palliative Care for Adults with

Cancer. The Manual (2004)

Holistic Needs Assessment

“all patients have their needs for rehabilitation services assessed throughout the patient pathway” Ch 10.12

“all patients who need rehabilitation services access them when and where they need them, and services are provided without delay” Ch 10.12

NICE GUIDANCE: Improving Supportive and Palliative Care for Adults withCancer. The Manual (2004)

Assessment of rehabilitation needs

Does use of a holistic needs assessment tool identify functional rehabilitation needs resulting from disease or treatment related symptoms?

Evidence suggests rehabilitation needs are not identified in oncology clinics (Cheville 2011, Gamble 2011)

What holistic assessment tool is used in your organisation?

Are rehabilitation needs identified?

FearFear

BreathlessnessBreathlessness

FatigueFatigue

PainPain

UncertaintyUncertainty

DepressionDepression

AnxietyAnxiety

Thoughts of deathThoughts of death

Concerns for familyConcerns for family

ShameShame

StigmaStigmaGuiltGuilt

Loss of functionLoss of function

Identity & RoleIdentity & Role

Sanders et al 2010; Fitch et al 2010; Henoch et al 2009

Impaired mobility

Reduced nutrition & weight loss

Communication

Dietz’s model of rehabilitation in oncology and palliative care:

Preventative - disability predicted & prevented if early intervention Examples-

Restorative - no or little residual disability expected Examples-

Dietz’s model of rehabilitation in oncology and palliative care:

Supportive - disease is controlled, but progressive disability probable & continued support needed Examples-

Palliative - disability cannot be corrected due to progressive disease but maximum quality of life in terms of comfort & function is the aim Examples-

Rehabilitation in palliative care- a conceptual conflict?

(Lawton 2000; Little 1998)

Liminality Temporality

Rehabilitation in palliative care

Helps patients gain opportunity, control, independence, resilience and dignity. (NCAT 2011)

Responds quickly to help people to adapt to their illness.

Takes a realistic approach to defined goals.Is continually evolving, taking its pace from

the individual (National Council for Hospice & Specialist Palliative Care Services, 2000. Fulfilling Lives. London: NCHPSPC)

Can help people prepare for death? (Charon 2009)

Rehabilitation in a deteriorating body? (Rasmussen 2010)

•Any symptom or concern impacting on physical,emotional or social functioning?•Any risk of future problems or deconditioning? •Consider referral to rehabilitation team, OT, physio, dietitian, SALT.

Time may be short…What’s important to your patient?

Dying in Old Age

Protracted processPunctuated by difficult decisions at many

different points in a person’s life.Negotiated with difficulty….

Reality of Death in Elderly

Lengthy period of decline: uneven courseDifficulty with prognosticationMultiple chronic medical conditionsProgressive losses: independence; controlHeavy burden of symptoms: multifactorialSubstantial care needs: often overwhelming

for family caregivers

Causes of “Dying” in the Elderly

Cardiovascular diseases: CHF, Stroke, MIPulmonary disease: Emphysema, COPDNeurodegenerative diseases: Dementia,

Parkinson’s, ALSFrailty syndrome, also known as senile

cachexia, or debilityCancers

Non-Cancer Medical Conditions

End Stage Cardiac Disease Frequent hospitalizations for exacerbations. Medications maximized, and still having symptoms. May be a candidate for a device, pacer, ICD, and

declines intervention NYHA Class 4 heart failure

Non-Cancer Medical Conditions

End-Stage Dementia FAST scale 7C (Functional Assessment Staging) Not able to walk, dress, or bathe properly Incontinent of bowel and bladder Ability to speak, less that 5-6 intelligible words Hospitalizations for aspiration pneumonia, sepsis,

infected wounds, pyleonephritis Difficulty swallowing or taking in adequate nutrition,

declining a tube for feeding

Non-Cancer Medical Condition

End Stage Pulmonary disease Disabling dyspnea, at rest, poorly responsive to

bronchodilators, cough Decreased functional ability, increased fatigue. Increased visits to Emergency Dept. for exacerbations Cor pulmonale Hypoxemia at rest, on supplemental O2

Spirituality in Palliative Care

Spirituality – incorporation of a transcendent dimension in life.

Religion – an organized effort, usually involving ritual and devotion, to manifest spirituality.

Faith – the acceptance without objective proof, of something.

Culture – the learned and shared beliefs, values, and lifeways of a designated or particular group that are generally transmitted intergenerationally and influence one’s thinking and action modes.

Cultural competence – the ability to perform and obtain positive clinical outcomes in cross-cultural encounters.

Spiritual care competence – the ability to perform and obtain positive clinical outcomes in spiritual care encounters.

Guidelines on the definition of spiritual and religious care

Religious care – given in the context of the shared religious beliefs, values, liturgies and lifestyle of a faith community.

Spiritual care – given in a one-to-one relationship, is completely person-centered and makes no assumptions about personal conviction or life orientation.

A Sense of meaning

Relationship

Hope

Our way of coping with life’s variety of experiences, especially the difficult and uncertain times.

Influenced by current and past life experiences.

In times of illness hope is focused on an available treatment and that it will be ssuccessful.

“I hope my family will be OK.”

Being There

Can counter feelings of abandonment but it can also be challenging.

To be there without doing is not easy and demands time and experience.

PeacePain and symptom control are crucial in

achieving a sense of peace; but this is broader than just physical needs.

Key elements in achieving peace are information, honesty and a recognition that sometimes the answer has to be “I don’t know”

Honest recognition that sometimes we can’t resolve all a patient’s needs but it may be that we can help them cope with their needs and find peace.

Spiritual Issues in Palliative Care

The WHY questions* Why did I get Cancer?* Why me?* What have I done to deserve this?* Why did God allow this to happen?

- When faced with these types of questions, one should utilize effective communication skills.

Six Step framework for responding to spiritual distress

1. Do not rush with an answer.2. Listen actively.3. Explore what has prompted this question.4. Respond to the patient’s feelings.5. Be aware of your own feelings.6. Refer to other professionals when

appropriate.

Hopelessness

Characterized by a lack of interest and involvement in everyday life and a withdrawal from the company of others.

This is a part of clinical depression

Spiritual distress

A person experiences feelings of despair in relation to their intrinsic personal beliefs and values.

Linked to the concept of total pain, which recognizes that pain can have not only a physical component but also an emotional, a social and a spiritual component.

Linked to suffering.

Suffering – a state of severe distress associated with events which threaten the intactness of a person.

Linked to feelings of lack of control and an overwhelming sense of fear of what the future holds.

See Box 6.2 for indicators of spiritual distress (p. 179-180)

Family Distress – it is important to recognize that the family can also be a source of stress and distress to the patient.

Spiritual self-awareness – One needs to appreciate our own essence of self. Be aware of our own feelings and spirituality, aware of the personal and professional limitations.

Spiritual Assessment and Care

The Multiprofessional Team Made up of: In the community: general practitioner, district

nurse, clinical nurse specialist and others as required.

In a nursing home: the GP’s, nursing staff, district and clinical nurse specialists and others.

In hospices: the core team comprises chaplain, doctors, nurses, occupational therapist, pharmacist, physiotherapist and social worker.

In hospitals: doctors, and nurses with ready access to a list of other named professionals.

Skills and Boundaries – It is the patient who will choose to whome they will talk and when and where. Privacy is often preferred and this explains why so many deep and spiritual conversations take place with nursing staff in intimate setting.

Chaplaincy – responds to the needs of the other person regardless of their faith, background or life stance.

Assessing Spiritual Needs

5 R’s of spiritualityReasonReflectionReligionRelationshipsRestoration

Assessing Religious needs

Many people will find comfort and meaning in their faith and associated sacraments and rites at such time.

Competence in Spiritual Care

1. Staff and volunteers with casual contact with patient/family

2. Staff and volunteers whose duties require personal contact with patients / families

3. Staff and volunteers who are members of the multiprofessional team.

4. Staff and volunteers whose primary responsibility is the spiritual and religious care of patients, visitors and staff.

Expected competencies

Appropriate understanding of the concept of spirituality at that level.

Awareness of their own personal spiritualityRecognition of personal limitationsRecognition when to refer onDocumentation of perceived need and

referral options.

Limitations of assessment tools and Competency frameworks

Focus of care need to be individual to each patient and family, with care being provided by the multiprofessional team.

Thank you!