1. Demystifying Palliative Care for people living with ALS
COMPASSION LIVES HERE
Demystifying Palliative Care for people living with ALS
Leslie Mitchell, BScN, CHPCN (C)
Rose DeAngelis, N, MSc(A), CHPCN, (C)
Teresa Dellar, MSW, PSW, FT
October 2016
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2. “This place is God’s waiting room and you are all his attendants.”
Noreen, 94, died of Breast Cancer in 2003, happy.

3. What is Palliative Care?
Comfort care
Aggressive symptom management
Prevention of unwanted symptoms
Provides quality of life in a dignified way
Focus’ on life, not death )
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4. PALLIATIVE CARE Focuses on the person not the disease,
to help the person to live out his/her life in whatever time remains,
in his/her preferred way,
in the setting of his/her choice.
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5. PALLIATIVE PHILOSOPHY
Palliative Care aims to relieve suffering and improve quality of living and dying.
CHPCA 2002
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6. PALLIATIVE PHILOSOPHY foundation
Holistic care, or what is now called “Whole Person Care” is practiced
Interdisciplinary
Self-determined (the patient is given options and decides)
Is both patient and family focused (family included in plan)
Deals with loss and anticipates grief
Is for any person, of any age, having any life threatening diagnosis and is willing to accept the help
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7. Good symptom control Is essential in both the management of
living with ALS
as well as for a peaceful and dignified death.
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8. The palliative approach to care
Should be offered, to a certain degree, to everyone who receives a diagnosis of ALS.
Some Neurologists will use a palliative approach to care throughout the entire time they are responsible for the care of patients living with ALS.
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9. a palliative approach to care
Patients may need information and assistance with decision- making throughout the illness about various care options, including:
Respiratory or nutritional interventions
Preferred place of care
Personal goals
Discusses end-of-life issues, concerns, fears, wishes
Assist with the control of pain and other symptoms (breathlessness) to improve comfort and quality of life
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10. A good health care team will:
Anticipate and assist the person in preparing for the multiple adjustments he/she will be experiencing as the disease progresses.
Be open to having the person and family express what those multiple losses means to them and provide guidance and support throughout the entire process.
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11. Assist Patients/families to adjust to multiple losses
Another aspect of care unique to ALS is that patients will experience a series of functional losses throughout the duration of the disease, each accompanied with issues of grief and bereavement.
This means that loss and grief do not ONLY pertain to dealing with death and dying for people living with ALS and their families.
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12. A good health care team will Think about advanced care planning by:
Keeping lines of communication open regarding end-of-life issues.
Practicing shared decision-making based on unbiased professional explanations, personal preferences, and religious or cultural beliefs.
Having repeated discussions with the person and his/her caregiver as to who will act as a proxy as to what his/her advanced care directives are, at least every 6 months.
A good health care team will:
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13. SYMPTOMS THAT WE COMMONLY SEE IN ALS PATIENTS AND CAN BE HELPED !
Pain
Dyspnea - difficulty breathing, breathlessness
Dysphagia - difficulty swallowing
Sialorrhea- excessive drooling
Insomnia- difficulty sleeping
Anxiety & depression
Bowel & bladder dysfunction
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14. THE MOST COMMONLY NOTED SYMPTOM: DIFFICULTY BREATHING, SHORTNESS OF BREATH, BREATHLESSNESS
Few patients plan to use invasive mechanical ventilation but the decision to choose invasive ventilation support should not wait until respiratory symptoms have developed.
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15. MEDICATIONS CAN HELP
Usually Opioids (e.g., morphine) – are often helpful to control BREATHLESSNESS
Usually Benzodiazepines – in small doses, may be added to help control ANXIETY
Usually Anticholinergics – can help to REDUCE SECRETIONS in the airways
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16. SOME NON-TRADITIONAL OPTIONS TO ASSIST WITH SYMPTOM MANAGEMENT
Complementary Therapies
Some patients have found it helpful to try complementary therapies such as aromatherapy, reflexology, massage, relaxation techniques, meditation and acupuncture.
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18. WHAT ARE THE GOALS OF PALLIATIVE CARE?
Relieve suffering and improve quality of life…
Treat all active issues
Prevent new issues from occurring
Promote meaningful & valuable experiences
Canadian Hospice Palliative Care Association, 2002
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19. WHAT MATTERS TO A PATIENT WHEN A CURE IS ACHIEVABLE?
Living fully until death
Maintaining relationships
Living in his/her community
Participating in activities that are meaningful to person
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20. WHAT MATTERS TO A PATIENT WHEN A CURE IS NOT ACHIEVABLE?
Living fully until death
Maintaining relationships
Living in his/her community
Participating in activities that are meaningful to person
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21. THE TERMINAL PHASE OF ALS
For some people, death can come very suddenly, often before an obvious end-stage is reached. Others experience a protracted final stage which can last for many weeks.
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22. What does Death from ALS look like or what it doesn’t look like…
Death caused by choking attacks are almost unheard of in ALS.
The most common cause of death in ALS is respiratory failure (following a respiratory infection).
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23. CHANGING GOALS OF CARE
As ALS progresses to a terminal phase, the goal of palliative care changes from maximizing function to providing compassionate end of life care to ensure a peaceful and dignified death according to the patient's beliefs and preferences.
A good health care team…..
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24. A few myths… Stopping Bipap (or mechanical ventilation) is suicide
I should try every treatment offered to me
Death is going to be painful or very bad (and maybe I need to consider avoiding that )
If the doctor has put me on Morphine, I must be dying (because its only for dying people, right?)
I will die faster if I take Morphine
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25. … more myths, related to palliative care
Palliative care only gets involved at the very end so this must mean I am dying
If I agree to palliative care, there is no hope for me
Palliative Care is the same thing as Euthanasia or l’aide medicale à mourir
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26. … cultural-societal thoughts, beliefs, resources
Our ‘never give up’ culture: ‘keep fighting’, ‘battle’ the disease
Avoidance of honest, informed, contextual and difficult discussions
Expectations vs goals of care
Lack of planning for death (like we plan for birth)!
Sometimes there aren’t resources accessible and available
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27. What does a dignified death look like?
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30. Merci !
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