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Palliative Hospice careWeeks 10-12
1. Advanced Care Planning and End-of-life Decision Making
2. Ethical And Legal Aspects of
Palliative Care3. Spirituality in Palliative Care
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Objectives
8. Apply guidelines of advanced care planning
and end of life decision making (Creative
Thinking and Teamwork)
9. Identify bioethical and cultural beliefs and
practices of a client/family/career with
palliative care (Creative Thinking and Ethical
Reasoning)
10. Apply spirituality in palliative care.(Pro
active and spiritual values)
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Advanced Care Planning and End-
of-life Decision MakingAdvanced care planning is a collaborative
process among patients, family members,
and health care professionals whereby
patients :
clarify their goals, values and preferences for
future medical treatment. (Tulsky, 2005)
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Part of advanced care planning process patients
may choose to complete advance directives
e.g. living will, andformally appoint decision-making surrogates
e.g. durable power of attorney for health care.
- Advanced care planning may help patientsincrease knowledge about and perceived
control over the dying process.
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Challenges in Advanced Care
PlanningHealth system issues, including professional
time limitations on visits with patients and
families, and patient engagement with
multiple providers can impede professionals
capacity to build rapport and trust.
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Challenges in Advanced Care
PlanningClinicians may lack specific training in
communication skills and willingness to
broach and maintain discussions about
potentially sensitive, emotionally charged
issues with patients and families.
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Challenges in Advanced Care
PlanningOver use of medical jargon can also interfere
with patient education, comprehension, and
meaningful clear discussions.
Patients and families may be reticent to ask
clarification questions, not wanting to appear
ignorant or to step outside the expected role
of good patient.
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Challenges in Advanced Care
PlanningPsychological barriers such as fear and anxiety
may influence the quality of advance care
planning discussions.
Patients and families may also become
emotionally stressed during discussions that
convey bad or sad news and their abilities to
process and respond to information can be
limited.
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Communication Strategies for
Advanced Care Planning
Development of a trusting relationship
with patients and families is integral
to high-quality medical care,
especially at end-of-life.
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Communication Strategies for
Advanced Care PlanningQuality of the patient-clinician relationship trust
and rapport can be enhanced by:
Encouraging patients to share their concernsand questions using active listening,
demonstrating respect, talking in an honest
and straightforward manner, being sensitive
when delivering difficult news, and
maintaining engagement about advanced
care planning issues with patient and family
throughout the disease process.
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Communication Strategies for
Advanced Care PlanningActive listening involves the use of open-ended
questions and appropriate reflection back
about the content of the speakers message.Allow sufficient time for patients to respond and
to avoid the tendency to interrupt.
Reflecting the main ideas and feelings of thepatients statement can be helpful.
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Communication Strategies for
Advanced Care PlanningLo and colleagues (1999) remind clinicians that
they do not have the sole responsibility for
responding to the patients suffering.
Referring troubled patients and families to a
social worker, psychologist, member of the
clergy, or another mental health professional
can be helpful and appropriate.
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Communication Strategies for
Advanced Care PlanningWhen patients and families becomes emotional,
Tulsky (2005) suggest that providers:
1. Acknowledge the affect (This must be...)2. Identify loss (It must be hard...)
3. Legitimize feelings (I think that is normal...)
4. Offer support (I will be here...)5. Explore (What....)
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Values Clarification and Discussion of Goals
Various tools have been developed to guide the
discussions such as:
1. Making Medical Decisions (American
Association of Retired Persons, 1996)2. Five Wishes (Commission on Aging with
Dignity, 1998)
3. Talking about your choices (Choice in Dying,1996) and
4. Your Life, Your Choices (Pearlman, Starks,
Cain et al, 2001)
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Sample Advanced Directive
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Sample Advanced Directive
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Sample Advanced Directive
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Sample Advance Directive / Living Will
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Sample Advance Directive with Living Will
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Advance Directives
Patients should think about choosing a
surrogate decision-maker who is able to cope
with potential conflict.
When patients complete advance directives,
they should be informed that they are free to
change the documents at any time.
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To help you live until you
die.
-Cecily Saunders, 1960
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Judgement and action
Making the decision and acting upon it.
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Theoretical approaches
Value Judgement
A Judgement that, in the broadest sense, ismad on behalf of someone else but may not
necessarily reflect the right decision for the
individual patient and family.
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Deontological Ethics
Doing what is right
Unconditional respect for persons and in
doing what is right regardless of the
consequence. What is right however may not
necessarily be good. A good action can also
have a bad outcome.
Eg whether to keep a confidence or to protectsomeone who is vulnerable by breaking that
confidence.
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Ethical Pronciples
Respect for the individual
Autonomy
Justice and utility Beneficence
Non-maleficence
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Respect for the Individual
Due regard for the feelings or rights of others,
avoiding harm or interference.
Whnen we have seen and acknowledged our
own hostilities and fears without hesitation, it
is more likely that we will also be able to sense
from within the other pole towards which we
want to lead not just ourselves but ourpatients as well.
- Nouwen (1976)
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Questions to ask in establishing
autonomy in health-care ethics
Are all individuals equally autonomous?
Are different decisions made by the same
individual equally autonomous?
To what extent are we obliged to respect
these autonomous decisions?
Consider the rights of the patient who
chooses to die at home especially if its the
clients wish.
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Equity and Justice
Nurses who are committed to the principle of
equity and justice have a duty to campaign for
further resources to improve services and to
maintain standards of care.
Justice demands that care provision is based
on current evidence and best practice.
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Advanced directive (living will)
A formal written advanced statement by a
patient refusing treatments in specific stated
situations that may occur in a future illness.
This tales effects if:
The maker of the advanced directive should
become able to communicate at some future
time. The circumstances specified in the advanced
directive arise.
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Implications for Nursing Practice
Professional nursing is all about having the
knowledge and skills to do things, an
awareness of the relationship between how
you act and about the potential outcome
result of those actions.
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Ethical choices should be guided not only by
roles and principles but also by thoughtful
analysis of feelings, intuitions and
experiences.
- Cooper, 1991
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Culture the learned and shared beliefs,
values, and lifeways of a designated or
particular group that are generally transmitted
intergenerationally and influence ones
thinking and action modes.
Cultural competence the ability to performand obtain positive clinical outcomes in cross-
cultural encounters.
Spiritual care competence the ability toperform and obtain positive clinical outcomes
in spiritual care encounters.
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NHS in Scotland issued guidelines on the
definition of spiritual and religious care
Religious care given in the context of the
shared religious beliefs, values, liturgies and
lifestyle of a faith community.
Spiritual care given in a one-to-one
relationship, is completely person-centered
and makes no assumptions about personalconviction or life orientation.
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A Sense of meaning
Relationship
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Hope
Our way of coping with lifes variety of
experiences, especially the difficult and
uncertain times.
Influenced by current and past life
experiences.
In times of illness hope is focused on an
available treatment and that it will bessuccessful.
I hope my family will be OK.
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Being There
Can counter feelings of abandonment but it
can also be challenging.
To be there without doing is not easy and
demands time and experience.
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Spiritual Issues in Palliative Care
The WHY questions
* Why did I get Cancer?
* Why me?* What have I done to deserve this?
* Why did God allow this to happen?
- When faced with these types of questions,one should utilize effective communication
skills.
Six Step framework for responding to spiritual
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Six Step framework for responding to spiritual
distress
1. Do not rush with an answer.2. Listen actively.
3. Explore what has prompted this question.
4. Respond to the patients feelings.5. Be aware of your own feelings.
6. Refer to other professionals when
appropriate.
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Hopelessness
Characterized by a lack of interest and
involvement in everyday life and a withdrawal
from the company of others.
This is a part of clinical depression
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Family Distress it is important to recognize
that the family can also be a source of stress
and distress to the patient.
Spiritual self-awareness One needs to
appreciate our own essence of self. Be aware
of our own feelings and spirituality, aware of
the personal and professional limitations.
S i it l A t d C
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Spiritual Assessment and Care
The Multiprofessional Team
Made up of:
In the community: general practitioner, district
nurse, clinical nurse specialist and others as
required. In a nursing home: the GPs, nursing staff, district
and clinical nurse specialists and others.
In hospices: the core team comprises chaplain,
doctors, nurses, occupational therapist,
pharmacist, physiotherapist and social worker.
In hospitals: doctors, and nurses with ready
access to a list of other named professionals.
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Skills and Boundaries It is the patient who
will choose to whome they will talk and when
and where. Privacy is often preferred and this
explains why so many deep and spiritualconversations take place with nursing staff in
intimate setting.
Chaplaincy responds to the needs of theother person regardless of their faith,
background or life stance.
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Assessing Spiritual Needs
5 Rs of spirituality
Reason
Reflection Religion
Relationships
Restoration
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Assessing Religious needs
Many people will find comfort and meaning in
their faith and associated sacraments and rites
at such time.
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Competence in Spiritual Care
1. Staff and volunteers with casual contact with
patient/family
2. Staff and volunteers whose duties require
personal contact with patients / families
3. Staff and volunteers who are members of the
multiprofessional team.
4. Staff and volunteers whose primary
responsibility is the spiritual and religious
care of patients, visitors and staff.
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Expected competencies
Appropriate understanding of the concept of
spirituality at that level.
Awareness of their own personal spirituality
Recognition of personal limitations
Recognition when to refer on
Documentation of perceived need and referral
options.
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Expected competencies
At level 3 assessment, interventions and
outcomes should be documented.
Confidentiality is also introduced.
At level 4 a competency framework for the
expertise required of the chaplain or director
of spiritual care, which includes being a
resource, offering staff support, providingeducation and training and influencing the
deleopment of national initiatives.
Limitations of assessment tools
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Limitations of assessment tools
and Competency frameworks
Focus of care need to be individual to each
patient and family, with care being provided
by the multiprofessional team.
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