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Ethics and End of Life Care

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Alison Senior

on 20 March 2014

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Transcript of Ethics and End of Life Care

The profound emotional and physical exhaustion that helping professionals and caregivers can develop over the course of their career. It is a gradual erosion of all the things that keep us connected to others: our empathy, our hope, and of course our compassion

Goal: To educate, validate and encourage supportive connections. Compassion fatigue and vicarious trauma are normal consequences of doing a job.

What do they do? - Offer workshops, virtual seminars and conferences, provide learning materials, organizational health – consulting services for agencies wishing to have an organizational health assessment, and an annual conference

ABC's: Awareness, Balance, Connection

Themes: Signs and symptoms, self-assessment, contributing factors, enhancing self-care and work/life balance

LID: Low Impact Disclosure

1. Introduction to End-of-Life Care

2. Loss of Occupation

3. Access to End-of-Life Services

4. Professional Boundary Issues

5. The Death of a Client

6. Futile Treatment and Palliative Sedation

7. Euthanasia and Assisted Suicide
What is End-of-Life Care?
• End-of-life care aims to relieve suffering and improve the quality of living while dying for persons diagnosed with an advanced or terminal illness (CAOT, 2011).

• It is appropriate for individuals of any age and/or their families, who are living with or at risk of developing a life-threatening illness (CAOT, 2011).

• Includes topics such as palliative care, hospice care, euthanasia and assisted suicide

Loss of Occupation
Palliative care clients experience significant disruption, alteration, and disengagement in meaningful occupations.
As death approaches, familiar roles are lost and clients are deprived of opportunities to engage in valued activities.

Often in palliative care, the focus for the healthcare team is on pain and symptom management and patient safety, with little thought given to occupations.

Autonomy Flip:
To what extent should a person’s welfare take precedence over a person’s wants?
Mentor Group E, March 19, 2014.
Ethics and End of Life Care
Thoughts to consider throughout our presentation:
• What does it mean to be a person and have human life? (this is the persisting ethics that is underlying the dramatic ethics of euthanasia and assisted suicide)

• “It makes ethical sense to consider human autonomy at the heart of healthcare.” (Seedhouse, 2009)

• Does respect for individual autonomy then underpin a right to die?

• Do we have the autonomy to demand hastened-death assistance from others?

• Should human autonomy consider not only the client, but also the health care practitioner and families as autonomous agents as well?

Resources for Bereavement
What does it all mean?
Assistance in suicide –
Knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide,
includes counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.

Physician Assisted Dying
– A doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request.

(Voluntary) Euthanasia
– Ending the patient’s life on request.
a doctor intentionally ending a person’s life through the administration of specific medication, at the person’s voluntary and competent request

Medical aid in dying
– an umbrella term that covers both physician assisted suicide and voluntary euthanasia,
reflects the fundamental value of support and medical intervention of a physician and health professionals.
Although the term “euthanasia” is used in countries such as Belgium and the Netherlands, it is emotionally charged, and not everyone agrees on its use.
Bill 52, Quebec
patient is competent, expresses own wishes, and enlists the support of a medical professional to carry them out
e.g. Sue Rodriguez, 1990s, ALS
legal in the Netherlands, Belgium, Luxembourg, Columbia, Albania

requested when an individual was competent, but performed when the patient has lost competence, or patient consent is unavailable
e.g. individual knows they are getting Alzheimers' and wants to have their life ended when all quality is gone;
NL only, and very limited circumstances

someone's life is taken against their will.
No organization in the world that advocates for this, nor is there any jurisdiction where it is legal.
Irrespective of choice-in-dying laws, all jurisdictions have murder laws that cover involuntary euthanasia.
Occupation at End-of-Life
Client Perspectives
A recent phenomenological study with palliative clients revealed important information relating to how occupation changes, and what occupations are valued at the end of life.

1. Taking time to engage in important occupations before it becomes too late
2. Making end-of-life arrangements as an occupation
3. Using occupations as a distraction from death
4. Focus on relationships
(Park Lala & Kinsella, 2011)

Dealing with the Death of a Client
Occupational therapists may feel unprepared to deal with clients they cannot rehabilitate, let alone clients who will die

 OT’s tend to measure their impact on client’s lives by functional gains and improvements in occupational performance.

 OT’s can also take an alternative approach, which focuses on the individual’s unique experience of dying and determine how the OT can assist the individual through this stage of life

Examples: talking with the client about death and dying, and supporting the caregivers
(Bye, 1998)

Ethical Distress
Knowing the “right” course of action but feeling constrained to act by institutional rules, systemic constraints

Moving forward, how can we as OT’s ensure that our practice philosophy is more closely aligned with actual OT practice in palliative care?

Compassion Fatigue
Ethical Boundaries in End-Of-Life Care
What is a professional boundary?

A professional boundary is the line separating a professional relationship with a client from a personal relationship with a client.

Standards for Professional Boundaries COTO (2009)

Discussing Death
Lived Experience of an OT Student

I wish I had felt comfortable enough to talk to Mr. R about death,
because I think he would have had wisdom to share…I never had
the courage to discuss death with Mr. R. It was the elephant in the
room and I could not bring myself to coax it out of the corner

– Katie E. Warne

Lessons in living and dying from my first patient:
An autoethnography Katie E. Warne, Steve Hoppes (2009)

College Standards
Standards for Professional Boundaries COTO (2009) Performance Indicator 5.2

“An occupational therapist will avoid inappropriate disclosure of the occupational therapist’s own personal information or emotional concerns to the client” - page 8

Class Exercise - Discussing Tough Topics

Form groups of two.

Imagine you are in the middle of a therapy session with
a client you have built strong therapeutic rapport with over
several weeks of treatment.

Open your envelope and discuss with your partner how you
would respond to a client who made the statement on the paper.
Palliative Care and Hospice Care
Study on OTs Experiences with Death and Their Coping Strategies
100 questionnaires were sent – 42 replied, and 4 were picked for in-depth interviews
1/3 said their facility did not provide any support, and found support from their co-workers, presentation of in-services and by creating a memory book

Personal Strategies for Coping:
 Believing that the person is no longer suffering
 Being able to talk with co-workers and peers
 Reflecting on past experiences with death

Other Potential Strategies:
 Learn to talk with clients who are dying about death
 Incorporating meaningful activities into treatment
 New therapists should have some clinical experience
before working in long-term or palliative care
 Get connected with a mentor who has experience
with death and dying
(Cipriani et al., 2000)

Occupation at End-of-Life
An OT Perspective
“Often what matters most to people isn’t about getting into the shower or getting on and off the toilet, it’s about being able to paint for those last few months of life. It’s about being able to communicate with their loved ones. It’s about being able to get outside and go to the beach. It’s those types of things that medical models just block…” (Keesing & Rosenwax, 2011, p.333)

Clinical experiences in palliative care?
What was your role?

Connecting with Patients vs. Staying Objective

"There are so many times I will go out to see a patient and then find out they died that night or the next day, so I can’t let… I just don’t let myself get close. I really don’t let myself get involved or that close because it’s very hard to do that” (Rahman, 2000).

Reflection Questions:
1. Sometimes clients will die over the weekend, or not on your workday – how will you feel closure if you could not say good-bye?

2. How will you balance your emotional/caring connection with your clients and still maintain a professional relationship in order to identify and care for their needs?

Are OTs Prepared for Dealing with Death Post Graduation?
The majority of programs in the health professions offer some education on death and dying, however, most are limited to one or two lectures. This leads to a high percentage of students graduating with limited formal exposure in this area.

(Dickinson et al., 1992, as cited in Cipriani, Crea, Dvrkel, Dagle, Monaghan, & Seldomridge, 2000).

 There is a high probability of working with populations experiencing death and other types of losses.

What does it mean to be an OT? To be an OT in palliative care?
Challenges to Supporting Engagement in Meaningful Occupations at End-of-Life Care
• Role of OT is often misunderstood by the healthcare team, clients, and caregivers

• Often seen as:
Equipment provider
Seating/Positioning/Mobility needs
Energy Conservation
Home modifications
Discharge planning

• Referral for Occupational Therapy in palliative care is mostly reactive & has a rehabilitative rather than a holistic focus

• Difficult to provide occupation-based services in the hospital setting

• Funding/time constraints

• Few OT’s employed to work with palliative clients in the community

Moving forward, how can we as OT’s ensure that our practice philosophy is more closely aligned with actual OT practice in palliative care?

• Expand traditional OT Practice – through active listening, open conversation, and just “being” with the client
• Embracing the new paradigm shift – enabling people, creating and respecting autonomy - recognition of the client and their family as central to decision-making
• Inform other HC providers, clients, and families of the OT role
• Political Practice in Occupational Therapy - Influence funding bodies and policy makers

Reflections on the Death of a Client
Special Considerations as Occupational Therapists when working in end of life care:
• Healthcare professionals should acquire background knowledge about how disease is viewed within specific communities and cultures, as well as reflect on their own values and beliefs about the dying process
• Seek to understand the client and caregivers expectations of dying; interview to determine client and families’ priorities and concerns
• Practice is framed on comfort and quality of life rather than rehabilitation
• The OT is concerned with the functional implications of symptoms (We must incorporate the client’s meaning and impacts of their symptoms into intervention, as well as how it is stopping them from carrying out their required objectives in life).

Where do OT’s work with palliative care clients?

• Less than 1% of OT’s in Canada work in palliative/hospice settings (Lala & Kinsella, 2011).

• Palliative care can be provided in physical hospice buildings, client’s homes, assisted living facilities and senior living buildings, and also acute care settings.

• Palliative care team is interdisciplinary and includes a physician, palliative care specialist, nurses, social workers, dieticians, occupational therapists, physical therapists, OTA/PTA, speech-language pathologists, volunteers, counsellors, and clergypersons.

A Social Worker’s Reflection on Losing a Client

“On some levels, I believed that I was alone in the grief and loss process since I was this client’s primary worker. I was attempting to practice self-care and cope with the loss, but at times it was difficult to continue with my daily responsibilities” (J. Zager, 2013).

Recommendations for Field Instructors:

Initiate the conversation/reach out to students
Receive training
Review healthy self-care techniques

Participants from the study by Cipriani et al., 2000, provided the following suggestions to help them cope with the loss of a client:

 Talking with co-workers in support groups
 Access to pastoral service/clergy services
 Access to in-services
 Books and literature on how to cope with the death of a clients
 Education on how to help family members cope with the death of their loved one

“Therapists often must navigate their own courses to find peace – intellectually and emotionally, personally and professionally – following a client’s death”
(Warne & Hoppes, 2009).

The Role of OT in End of Life Care

CAOT and Quality End of Life Care Coalition Canada (QELCCC)
CAOT recently endorsed the mandate of the Quality End of Life Care Coalition Canada (QELCCC) (2010), which believes all people of all ages in Canada have the right to quality end-of-life care that allows them to die with dignity, free of pain, surrounded by their loved ones, in a setting of their choice

The Role of OT in End of Life Care
A range of OT services have been identified in the literature:
• Education regarding fatigue management/energy conservation
• Retraining in ADLs and IADLS, including feeding
• Seating and Positioning Needs
• Evaluating and prescribing adaptive equipment
• Home assessments
• Splinting to prevent deformities and control pain
• Connecting the patient with community caregivers and supports
• Support and education for the family and caregivers
• Lifestyle Management – including investigating hobbies and leisure activities helping client to engage in occupations at end of life that provides self-expression and engagement while allowing them to find peace with the dying process.


“Some terminally-ill and some dying people request assisted suicide or euthanasia as they would trade quantity of life for quality of life, or at least a certainty to the end of life. The ethical dilemma for healthcare practitioners then is how to balance the patient’s view of quality versus quantity of life against the historical and culturally developed roles and responsibilities of their healthcare profession to support life and prevent suffering.” (MacLeod et al, 2012).
Expression of Emotion
Lived Experience of an OT Student

Move, Katie, just get out of here before you look like a blubbering schoolgirl in front of
the nurses’ station. They have already commented on how nobody will take you seriously
when you look and talk the way you do ‘A young face and a little voice, you’ll never be
able to get those patients out of bed that way.’ What will they think of you when you cry?
Where can I go? I need to get away. I’ll go down this hallway, I think the workers are
finished on this wing, yes it looks empty. Oh, great a bathroom.

I opened the door, flipped on the light, and pushed
the button on the lever to lock everyone else out. I stood
with my back against the wall and let my legs give way.
I sank to the floor, wrapped my arms around my knees,
let my head drop and cried. I cried for Mr. R, I cried for
his family, and I cried for myself
” -Katie E. Warne

Ethic of Care
An obligation to care which emphasizes the importance of human relationships
- Noddings (1995)

Dame Cicely Saunders
A nurse, social worker and physician associated with the birth
of the hospice movement
In 1948, asked patient David Tasma, a man with inoperable
cancer, what do you want me to say?

I want what is in your
mind and in your heart

The best of scientific medicine and care that is compassionate

You matter because you are you, and you matter to the end of your life. We will
do all we can not only to help you die peacefully, but also to live until you die.
- Dame Cicely Saunders

Bill 52
"I will be voting against Bill 52. Basically, I don't think anyone has the right to assist someone in dying. Nobody has the right to choose when to die. This should be a natural process of the body" -Lawrence Bergman, provincial Liberal MLA

"We cannot change that all of us will die, but we can impact how we die. Surely, we all have a right to a death that is peaceful, painless, and that preserves our dignity" -Dying with Dignity Submission Letter to Bill 52
Who's eligible:
Quebec patients, full of age, capable of giving consent to care and possessing a Quebec medicare card
Suffering "an incurable serious illness"
Suffering "an advanced state of irreversible decline in capability"
Suffering "constant and unbearable physical or psychological pain"

Expression of Emotion
College Standards
Standards for Professional Boundaries COTO (2009) Performance Indicator 4.3

“An occupational therapist will be alert to, and effectively manage his or her own emotional reactions to a client and ensure that they do not interfere with the therapeutic relationship”

Ethics: The Heart of Health Care
“But death and suffering can become so familiar that they lose their moral sting. There is a dilemma here: to survive emotionally it is necessary to distance oneself from a constant stream of tragedy and torment. But once it becomes normal to stand apart from other people’s anguish one’s sensitivity is at risk…I fear that many in conventional health care overprotect themselves from the value of tears, often at great cost to patients, to whom suffering is never commonplace” (Seedhouse , 2009, p. 3)

Palliative Sedation
“Sedating a[n imminently dying] patient to a point of unconsciousness to relieve one or more symptoms that are intractable and unrelieved despite aggressive symptom-specific treatments, and maintaining that condition until the patient dies”. (Taylor, 2003)

A year and a half ago a close family friend was diagnosed with terminal lung cancer. This February his condition deteriorated rapidly, he needed assistance with all ADLs. His wife was struggling to manage his care despite having a nurse come in for part of the day. It was with great consideration that his wife decided he needed hospice care. Once there, staff members provided him with high quality care to maintain his dignity and quality of life to the highest degree. His family was able to spend their last moments with him in enjoyment without the stress of his immediate medical needs. He has now passed, but his wife and children take comfort in knowing he maintained his human value until the end.

Case Study
D.R. is a 37 year-old man whom, 6 months ago, was diagnosed with stage 4 terminal bone cancer which spread to his lungs. Despite taking pain medication, D.R. suffers from excruciating bone pain. The pain has become so intense he is left bed-bound. D.R. is considering palliative sedation due to the intense pain, but doctors predict he still has many months to live.

Should D.R. be allowed palliative sedation? Why or why not?
Relevance to OT
Is OT relevant when patients want to end occupation?

1. Advise on current and expected function

2. Advocate (CAOT, 2007)

Canadian Association of Occupational Therapists. (2007). Profile of occupational therapy practice in Canada. Ottawa: CAOT Publications ACE.

Cipriani, J., Crea, J., Dvrkel, K., Dagle, S., Monaghan, K. & Seldomridge, L. (2000). Coping with the death of clients: A pilot study of occupational therapy practitioners. Physical & Occupational Therapy in Geriatrics. 17(4), 65- 77.

Compassion Fatigue Solutions Inc. (2014). Compassion Fatigue Solutions. Retrieved from http://www.compassionfatigue.ca

Garrard, E., & Wilkinson, S. (2005). Passive euthanasia. Journal of Medical Ethics, 31, 64-68.

Hoppes, S., & Warne, K. (2009). Lessons in living and dying from my first patient: An autoethnography.Canadian Journal of Occupational Therapy, 76: 309. doi: 10.1177/000841740907600410

HPCA. (2009). Ethical issues in palliative care. In Boucher, S., Cameron, S., Colgan, D., & Nieuwmeyer, S. (Eds.), Legal aspects of palliative care (p 19-32). Pinelands, South Africa: Hospice Palliative Care Association.

Keesing, S., & Rosenwax, L. (2011). Is occupation missing from occupational therapy in palliative care?
Australian Occupational Therapy Journal, 58, 329-336. Doi: 10.1111/j.1440-1630.2011.00958.x

National Ethics Committee, & Veterans Health Administration. (2007). The ethics of palliative sedation as a therapy of last resort. American Journal of Hospice & Palliative Medicine, 23 (6), 483-491.

Park Lala, A., & Kinsella, E.A. (2011). A phenomenological inquiry into the embodied nature of occupation at end of life. Canadian Journal of Occupational Therapy, 78:246-254. Doi: 10.2182/cjot.2011.78.4.6

Rahman, H. (2000). Journey of providing care in hospice: Perspective of occupational therapists. Qualitative Health Research. 10(6), 806-818.

Saunders, C. (2001). The evolution of palliative care. Journal of the Royal Society of Medicine, 94(9), 430-432.

Seedhouse, D. (2009). Ethics: The heart of health care (3rd ed.) Chichester, UK: Wiley & sons.
ye, R. A. (1998). When clients are dying:
Occupational therapists’ perspectives. The Occupational Therapy Journal of Research. 18(1), 3-24.

Taylor, R.M. (2003). Is terminal sedation really euthanasia? Medical Ethics, 10 (3), 8.

The College of Physicians & Surgeons of Manitoba. Withholding and withdrawing life-sustaining treatment. Statement No. 1602

Warne, K. E. & Hoppes, E. (2009). Lessons in living and dying from my first patient: An autoethnography. Canadian Journal of Occupational Therapy. 76(4), 309-316.

Zager, J. (2013). Coping with the death of a client. Field Educator. Retrieved from http://fieldeducator.simmons.edu/2013/04/coping-with-the-death-of-a-client/

Withholding/Withdrawing Life Sustaining Treatment
Life Sustaining Treatment:
“Any treatment that is undertaken for the purpose of prolonging the patient’s life and that is not intended to reverse the underlying medical condition”. (College of Physicians & Surgeons of Manitoba, Statement No. 1602)

This is NOT assisted suicide
Considered passive suicide as it eliminates care which is delaying death (Garrard & Wilkinson, 2005)

Futile Treatment
Treatment that is bound to fail
Treatment that may not restore a patient to independence or acceptable quality of life
Treatment that simply prolongs dying (HPCA, 2009)

Quality of Life at the End of Life
During a patient’s journey goals turn from prolonging life/maximizing function to maximizing quality of life. (National Ethics Committee & Veterans Health Administration, 2007)

Withholding/Withdrawing Treatment
Palliative Sedation
Relevance to OT

Is it Ethical to Subject Patients to Futile Treatment?
Factors to consider
Autonomy: Patients have rights to accept, refuse, or terminate treatments.

Beneficence: It is not clear whether treatment will be futile. Providing maximal benefit hard to predict.

Non-Maleficence: Side effects, complications, or time associated with futile treatments may decrease quality of life, or prolong suffering.

Justice: By continuing futile treatment, patients may be preventing others to access needed services.
(HPCA, 2009)
1. Is palliative sedation ethically different from physician-assisted suicide?
2. Is palliative sedation ever ethically appropriate for patients who are not imminently dying?
3. Should willingness to forgo life-sustaining treatment be a condition for receiving palliative sedation?
4. Is palliative sedation an ethically appropriate response to “existential” suffering?
5. May palliative sedation be provided to patients who lack decision-making capacity?
( National Ethics Committee & Veterans Health Administration, 2007)
Access to Palliative Care
"At some time, in some way, we must all face the end of life. And most of us share a common hope – that when death comes to us or to a loved one, it will be peaceful and free of pain. We hope to face death surrounded by those we love, feeling safe, comfortable and cared for" -
The Canadian Association of Palliative Care

What percentage of people receive palliative care services?
A) 40-60 %

B) 16-30 %

C) 80-90%

D) 5-10%

Does anyone have an experience related to the difficulties of accessing end-of-life care?
Baby Boomers
Baby Boomers Today
“There are only four kinds of people in this world:
those who have been caregivers;
those who currently are caregivers;
those who will be caregivers,
and those who will need caregivers.”

-Rosalynn Carter, former First Lady
Quebec legislature looking to legalize both physician-assisted suicide and voluntary euthanasia.
The Economist’s Intelligence Unit ranks Canada as ____ in an international ‘Quality of Death Index'

A) 2nd
B) 1st
C) 9th
D) 30th
E) 60th
F) 15th
“There are only four kinds of people in this world:
those who have been caregivers;
those who currently are caregivers;
those who will be caregivers,
and those who will need caregivers.”

-Rosalynn Carter, former First Lady
OT Role in Assisted Suicide
Involved in ensuring truly informed and rational consent
Also, educating on the options, advocating for the client's wishes,
Lethal substance or forces are used to end the patients life

Common treatments necessary to stay alive, such as antibiotics, are withheld
Palliative Care
Hospice Care
Terminal or chronic
stage of illness

Care can last months
or even years

Not expected to avoid

Terminal stage of

Generally eligible if considered within six months of death

Focus on comfort
rather than
Tend to emotional needs, spiritual needs and quality of life

Affirms life

Neither hastens nor prolongs death
(Cooper, 2006; Trump et al, 2005)
“Some terminally-ill and some dying people request assisted suicide or euthanasia as they would trade quantity of life for quality of life, or at least a certainty to the end of life. The ethical dilemma for healthcare practitioners then is how to balance the patient’s view of quality versus quantity of life against the historical and culturally developed roles and responsibilities of their healthcare profession to support life and prevent suffering.” (MacLeod et al, 2012).
Reflections of an Ethic of Care
Lessons in living and dying from my first patient: An autoethnography Katie E. Warne, Steve Hoppes (2009)
“The solution to health care’s failings is to use human suffering to provoke human thinking. Death can make us dull, or it can reawaken us to the importance of every single human interaction every single minute” (Seedhouse, 2009, p. 6)
"When you start to lose your humanity, you're in the wrong profession."
Reflections on Access
Reflections on Loss of Occupation
Batsford, S. Kingston Whig Standard, 2014.
Quebec Commission on Dying with Dignity, 2013
Full transcript