ALS Conference June 2008 Palliative Care

Dr. Samantha Winemaker Palliative Care Consultant

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

Definition Of Palliative Care

Palliative care aims to relieve the suffering and improve the quality of living and dying in those patients who have a progressive incurable disease.

Definition Cont

Palliative care strives to help the person and his or her family to address issues, expectations, needs, hopes and fears; prepare for and manage self-determined life closure and the dying process; cope with loss and grief during illness and bereavement.

At What Stage Should Palliative Care Be Considered?

Old Model
Curative
Life-Prolonging
D E A T H

Illness Trajectory

Diagnosis

Palliative Care

What is wrong with this model?

Suggests that there is a distinct moment in the disease trajectory that the patient becomes palliative. Prior to this, palliative care is not necessary. Prior to this, we can deny or avoid talking about the possibility of death. Prior to this we provide active care and only provide palliative care when there is nothing else that can be done!

At What Stage Should Palliative Care Be Considered?

Current Model
Therapy to cure* or control disease End of Life Care Terminal phase
Bereavement Care

Palliative Care Approach

Illness Trajectory

Diagnosis
* does not refer to ALS

Death

Palliative Care Should Begin at Breaking Bad News

Patients are often anxious about the dying process from soon after the time of diagnosis. Patients potentially live with this fear for 2-5 years depending on their prognosis.

Developmental Tasks of People Who are Dying

Develop a renewed sense of personhood and meaning. Bring closure to personal and community relationships. Bring closure to worldly affairs. Accept the finality of life and surrender to the transcendent.

Defining Quality of Life

We have made some huge assumptions!

Quality of Life Key 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.

Quality Of Life Domains

Family Friends/social Profession Entertainment Spiritual life* Finances Health

Spirituality

90% regard their spiritual and physical health as being 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.

What makes talking about EndOf-Life so difficult?

Western medicine has evolved into a more impersonal approach and a never say die attitude. In the 19th century death more often occurred in home. In the 20th century hospitals began to offer hope for a cure, death and dying became less of a household event and most die in institutions. Western society has become detached from the dying process, and many are no longer comfortable discussing the topic.

What Makes talking about Endof-Life So Difficult?

Fear of upsetting a person by talking about illness/dying. Fear of providing more information than expected. Fear of not having the right answers. Lack of knowledge and skills around effective communication. Fear of extinguishing hope*.

Instead.

People encourage positive thinking and discourage 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 physical symptoms. We assume hope is very fragile.

Hope

In spite of considerable challenges, individuals are able for the most part to remain hopeful. Hopefulness is an active style of coping. Hopelessness is not related to length or severity of illness.

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 achieving goals Hope of every day living Hope in the persons worth as an individual and finding meaning in their own life

Different Forms of Hope as the Patients Illness Progresses

Hope in the healing of relationships and having special 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.

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.

When subjects become taboo

When We Avoid Open Communication

Living with dying may become unbearable. Hopelessness. Loss of meaning, worthlessness. Helplessness. Requests for euthanasia, physician assisted suicide. Suicidal thoughts. Physical symptoms are amplified.

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, selfforgiveness, reconciliation.

When to Start End-Of-Life Discussions?

1. 2. 3. 4. 5. 6.

The patient or family asks or opens the door for EOL information and/or interventions. Severe psychological and/or social or spiritual distress or suffering. Pain requiring high dosages of analgesic medications. Dysphagia requiring feeding tube. Dyspnea or symptoms of hypoventilation, a forced vital capacity of 50% or less. Loss of function in two body regions (bulbar, arms, legs).

Nearing the end..

Terminal phase Allowing a natural death

Terminal Phase

Key word is phase. Prognostication is challenging. Final phase varies in length from days to months. Clinical features may include;
Progressive functional decline. Intolerance to feeds. Increasing respiratory dysfunction and dyspnea.

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 to hypercapnia)

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, IV etc. Withdraw of treatment does not equal withdraw of care!

Terminal Phase

Importance of increased support for patient and family. Open discussion about place of care planning. Importance of information about what to expect as patient declines. Guidance around time of death. Pronouncement plan in place.

The Dying Persons Bill of Rights

(Adapted from Barbus, 1995)

I have the right to be treated as a living human being until I die. I have the right to maintain a sense of hopefulness however changing its focus may be. I have the right to participate in decisions concerning my care. I have the right to expect continuing medical and nursing attention even though cure goals must be changed to comfort goals. I have the right not to die alone.

The Dying Persons Bill of Rights

I have the right to be free of pain. I have the right to have my questions answered honestly. I have the right not to be deceived. I have the right to have help from and for my family in accepting my death. I have the right to die in peace and dignity.

The Dying Persons Bill of Rights

I have the right to retain my individuality and not be judged for my decisions which may be contrary to beliefs of others. I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.