Demystifying Palliative Care for people living with ALS

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Presentation transcript:

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 © West Island Palliative Care Residence. All rights reserved.

“This place is God’s waiting room and you are all his attendants.” Noreen, 94, died of Breast Cancer in 2003, happy.

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 ) © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

PALLIATIVE PHILOSOPHY Palliative Care aims to relieve suffering and improve quality of living and dying. CHPCA 2002 © West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

Good symptom control Is essential in both the management of living with ALS as well as for a peaceful and dignified death. © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

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: © West Island Palliative Care Residence. All rights reserved. 12

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 © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

© West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

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 © West Island Palliative Care Residence. All rights reserved.

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. © West Island Palliative Care Residence. All rights reserved.

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). © West Island Palliative Care Residence. All rights reserved.

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….. © West Island Palliative Care Residence. All rights reserved. 23

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 © West Island Palliative Care Residence. All rights reserved.

… 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 © West Island Palliative Care Residence. All rights reserved.

… 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 © West Island Palliative Care Residence. All rights reserved.

What does a dignified death look like? © West Island Palliative Care Residence. All rights reserved.

© West Island Palliative Care Residence. All rights reserved.

© West Island Palliative Care Residence. All rights reserved.

Merci ! © West Island Palliative Care Residence. All rights reserved.