palliative dr. winemaker

8/13/2019 Palliative Dr. Winemaker

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ALS Conference June2008

Palliative Care

Dr. Samantha Winemaker

Palliative Care Consultant


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Objectives

Define Palliative Care

Describe the Old vs New Model of Care

Domains of Quality of Life Maintaining Hope

When Dying Becomes Taboo

Care in the Terminal Phase


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Definition Of Palliative Care

Palliative care aims to relieve the suffering andimprove the quality of living and dying in thosepatients who have a progressive incurable

disease.


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Definition Cont

Palliative care strives to help the person and hisor her family to address issues, expectations,needs, hopes and fears; prepare for and manage

self-determined life closure and the dyingprocess; cope with loss and grief during illnessand bereavement.


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At What Stage Should Palliative

Care Be Considered?

DE

A

T

H

Diagnosis

CurativeLife-Prolonging

IllnessTrajectory

Palliative Care

Old Model


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What is wrong with this model?

Suggests that there is a distinct moment in the diseasetrajectory that the patient becomes palliative.

Prior to this, palliative care is not necessary.

Prior to this, we can deny or avoid talking about thepossibility of death.

Prior to this we provide active care and only providepalliative care when there is nothing else that can be

done!


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At What Stage Should Palliative

Care Be Considered?

Diagnosis

Therapy to

cure* orcontrol

disease Palliative Care

Approach

IllnessTrajectory

Death

Bereavement

Care

End of Life Care

Terminal phase

Current Model

* does not refer to ALS


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Palliative Care Should Begin at

Breaking Bad News

Patients are often anxious about the dyingprocess from soon after the time of diagnosis.

Patients potentially live with this fear for 2-5years depending on their prognosis.


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Developmental Tasks of People

Who are Dying

Develop a renewed sense of personhood andmeaning.

Bring closure to personal and communityrelationships.

Bring closure to worldly affairs.

Accept the finality of life and surrender to thetranscendent.


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Defining Quality of Life

We have made some huge assumptions!


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Quality of LifeKey Concepts

The Well Being Paradox Is generally underestimated by those in good health.

Does not correlate with physical strength and function.

Depends on health-related and non-health related

factors.

May be high in individuals with ALS.

Is best measured by multidimensional instruments.

Ultimately is determined by the individual.


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Quality Of Life Domains

Family

Friends/social

Profession Entertainment

Spiritual life*

Finances Health


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Spirituality

90% regard their spiritual and physical health asbeing equally important.

So..if we focus our care only on the

physical parts we are missing the boat!

However, caring for a persons spirits inevitably

requires talking about dying.


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What makes talking about End-

Of-Life so difficult? Western medicine has evolved into a more impersonal

approach and a never say die attitude.

In the 19thcentury death more often occurred in home.

In the 20th

century hospitals began to offer hope for acure, death and dying became less of a household eventand most die in institutions.

Western society has become detached from the dying

process, and many are no longer comfortable discussingthe topic.


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What Makes talking about End-

of-Life So Difficult?

Fear of upsetting a person by talking aboutillness/dying.

Fear of providing more information thanexpected.

Fear of not having the right answers.

Lack of knowledge and skills around effectivecommunication.

Fear of extinguishing hope*.


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Instead.

People encourage positive thinking anddiscourage any reflection about death.

People may promote the adoption of a fighting

spirit. Being realistic can be equated with giving up,

or lack of compassion.

It becomes easier and easier to focus on physicalsymptoms.

We assume hope is very fragile.


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Hope

In spite of considerable challenges, individualsare able for the most part to remain hopeful.

Hopefulness is an active style of coping.

Hopelessness is not related to length or severityof illness.


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Different Forms of Hope as the

Patients Illness Progresses

Hope of a miracle cure

Hope of living longer

Hope of making it to certain events or achievinggoals

Hope of every day living

Hope in the persons worth as an individual andfinding meaning in their own life


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Different Forms of Hope as the

Patients Illness Progresses

Hope in the healing of relationships and havingspecial times with family and friends.

Hope of good pain and symptom control.

Hope of being well cared for and supported.

Hope in finding spiritual meaning.

Hope of a peaceful death.


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Themes Relevant to Hope in ALS

Hope for cure/misdiagnosis.

Social support.

Search for information.

Spiritual beliefs.

Limiting the impact on others.

Adapting to changing capacities.

Living in the moment.

Self-transcendence.


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When subjects become taboo


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When We Avoid Open

Communication Living with dying may become unbearable.

Hopelessness.

Loss of meaning, worthlessness.

Helplessness.

Requests for euthanasia, physician assistedsuicide.

Suicidal thoughts.

Physical symptoms are amplified.


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Consequences of silence.

Missed opportunities; Completing our worldly affairs

Coming to closure in personal/professional relationships

Learning the meaning of ones life Loving oneself and others, accepting the finality of life

Sensing a new self beyond personal loss

Recognizing a transcendent realm and surrendering to the

unknown.

Life closure including life review, saying good-byes, self-forgiveness, reconciliation.


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When to Start End-Of-Life

Discussions?1. The patient or family asksor opens the door for

EOL information and/or interventions.

2. Severe psychological and/or social or spiritual distress

or suffering.3. Pain requiring high dosages of analgesic medications.

4. Dysphagia requiring feeding tube.

5. Dyspnea or symptoms of hypoventilation, a forced

vital capacity of 50% or less.6. Loss of function in two body regions (bulbar, arms,

legs).


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Nearing the end..

Terminal phase

Allowing a natural death


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Terminal Phase

Key word is phase.

Prognostication is challenging.

Final phase varies in length from days tomonths.

Clinical features may include; Progressive functional decline.

Intolerance to feeds.

Increasing respiratory dysfunction and dyspnea.


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Terminal Phase

Fear of choking to death

~90% of patients die peacefully (compared to~48-80% non ALS population)

Most die in their sleep (usually due tohypercapnia)


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Terminal Phase

Respect patients autonomy and sense of

control.

Always remember there is no right way to die.

Importance of revisiting advanced directives.

Respect the right to withdraw PEG, NIV, IVetc.

Withdraw of treatment does not equal withdrawof care!


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Terminal Phase

Importance of increased support for patient andfamily.

Open discussion about place of care planning.

Importance of information about what to expectas patient declines.

Guidance around time of death.

Pronouncement plan in place.


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The Dying Persons Bill of Rights(Adapted from Barbus, 1995)

I have the right to be treated as a living human beinguntil I die.

I have the right to maintain a sense of hopefulnesshowever changing its focus may be.

I have the right to participate in decisions concerningmy care.

I have the right to expect continuing medical and

nursing attention even though cure goals must bechanged to comfort goals.

I have the right not to die alone.


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The Dying Persons Bill of Rights

I have the right to be free of pain.

I have the right to have my questions answeredhonestly.

I have the right not to be deceived.

I have the right to have help from and for myfamily in accepting my death.

I have the right to die in peace and dignity.


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The Dying Persons Bill of Rights

I have the right to retain my individuality andnot be judged for my decisions which may becontrary to beliefs of others.

I have the right to be cared for by caring,sensitive, knowledgeable people who willattempt to understand my needs and will be able

to gain some satisfaction in helping me face mydeath.

palliative dr. winemaker

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