Transcript Hospice NZ Education Project

Learning outcomes
1.
Understand ethical definitions
2.
Explain what is meant by an ethical issue
3.
Describe the responsibilities of health professionals
4.
Give examples of ethical issues we may face
5.
Explain the decisions made prior to withholding or
withdrawing treatment.
2
Models of care
3
Cultural considerations in ethical decision making
•
What are the attitudes, values and beliefs you take to the bedside?
•
What are your rituals around death and dying?
•
What is the organisational culture?
•
Discuss the important role of the family at this time
Adapted from Waitemata Palliative Care Education Programme 2011
4
Spiritual considerations
•
Establishing the residents beliefs and values will be important in
planning their care
•
Spirituality involves the search for meaning, more then purely
religious beliefs
•
Spiritual beliefs vary widely within ethnicities
•
The time approaching death may be one of contemplation or of
personal completion or preparation
•
The resident’s beliefs will affect what treatments or care they may
wish to have
5
Definitions of terms
• Ethics
• Do not resuscitate (DNR) or allow natural death (AND)
• Informed consent
• Advance care planning
• Advance directives
6
Ethical issues in aged care
The older person, and those caring for them at the end-of-life face many
complex issues surrounding physical, psychological and spiritual needs
Challenging issues such as;
•ensuring informed consent
•determining capacity
•ensuring confidentiality
•withdrawing/withholding life sustaining treatments
•continuing futile treatments
Using ethical guidelines means we can help the resident make decisions about
the care they would like
“An ethical problem is a situation involving conflict about the right thing to do.
Any health care decision that involves competing values is an ethical problem”
Cameron, 2002, p 637
7
Not for resuscitation (NFR) or allowing natural death (AND)
• NFR policy is framed in times of crisis; often offered when
death is imminent and at a time when the resident may be too
unwell to be involved in the decision
• AND is a positive choice – not last resort
• The intent of the order is very clear with death in the title
Venneman et al (2008) “Allow natural death” versus “do not
resuscitate” three words that can change a life. Journal
medical ethics 34:2-6
8
Not for resuscitation (NFR) or allowing natural death (AND)
AND has caused a great deal of debate
However the literature continues to support these words;
• A kinder, gentler approach would benefit everyone
• Positive action of what we are doing rather than what we are
not going to do
• It reflects a model of care in which death is not seen as a
failure of treatment
9
Informed consent
In order to be valid it must be;
• given by a competent person
• informed
• obtained without coercion
Competency is a clinical judgement . It may fluctuate from time
to time, especially in palliative care
Residents have the right to accept or refuse information
When residents do not have competence, family can contribute
to the informed consent
10
What is advance care planning?
What is an advance directive?
•
Advance care planning (ACP) is the voluntary process of preparing for
likely scenarios near the end of life. It usually includes assessment of and
discussion about a person’s understanding of their medical history and
condition, values, preferences, and personal and family resources
•
Advance directives contain instructions that consent to, or refuse,
specified medical treatment in the future. Advance directives are defined in
the Code of Health and Disability Services Consumers’ Rights as written or
oral directives in which the patient makes a choice about a possible future
health care procedure, and which are intended to be effective only when the
patient is no longer competent. For this reason, advance directives are
also, though less frequently, referred to as ‘living wills’
Taken from MOH consultation document which is available on the Ministry of Health’s website:
http://www.moh.govt.nz/moh.nsf/indexmh/advance-care-planning-consultation
11
Palliative care
•
Quality of life
•
Value of life
•
Meaning of life
“It is not death itself which older people fear so much as the manner of
their dying”
Guthrie, M. Address to MOH workshop, 2002
12
Death and dying in modern times
•
The fact we die is nothing new. Illness and death have always been part
of human experience
•
However how we get sick today and how our society responds to sickness
has changed radically
•
Medical advances made in the recent decades are so astonishing that this
now makes end of life decision making that much more difficult
•
As the nature of illness has changed, so too has dying
•
Palliative care is trying to respond to these changes and uses the tools
developed by modern medicine to meet the needs of the dying to relieve
suffering and enhance quality of life
•
Dying is an important phase of life, one in which people have the right to
expect quality of life to ensure a death with dignity occurs
13
What older people know and want
That good ageing involves weaving death
in to the pattern of one’s life
Realise that their bodies do not always
recover from disease or illness
They therefore need really competent
doctors, nurses, carers and other health
staff to provide care that inspires
confidence
Kathy Peri, Lecturer/Researcher in Gerontology
14
Ethical issues in context
•
Ethical issues are raised by virtually all clinical decisions we make – we
make them on a daily basis and most of the time don’t realise it
•
Clinical decisions are often made not knowing in advance whether the
decision will prove to be right or wrong
•
Knowledge of abstract principles that follow is helpful but difficult ethical
issues cannot be resolved simply by applying principles
•
Residents, families and health workers often hold different values and
they may come into conflict requiring creative resolution
15
Our responsibility
Naming and clarifying ethical
issues is an important part of
all our roles
Building trust between
ourselves, the resident, their
family and all other members
of the care team is vital to
resolving ethical issues
16
A question of respect
Respect for individuals is one
of the most basic principles in
ethics
Treating them as the unique
person they are and creating
with them a care plan that
reflects that uniqueness
incorporating their beliefs,
values and goals
17
Autonomy
•
Recognises the individual’s right
and ability to decide for him - or herself according to their beliefs,
values and life plan
•
Decisions are unique and may be
different from the course that is
deemed “right” or “wise”
•
Gentle truth telling and exchange of
accurate information about their
health status, options, planned care
and future expectations is essential
•
Informed consent
18
Ethical decision making framework
Framework steps include;
•
assessing the resident’s knowledge
•
teaching the resident about care alternatives
•
examining the residents values and beliefs about dying
•
discussing the resident’s beliefs and choices with their
significant others who will be affected by their decisions
•
recording the resident’s care choices and proxy
Jennifer Bialk 2004
19
The
I’s
The “I’s”
The ‘I’ of the client: look at me and hear
what I am really saying
The ‘I’ of the family: remember I am often
the eye and ears for my family member
The ‘I’ of the health worker: I have a
responsibility to keep an eye on the ball at
all times
Kathy Peri Lecturer/Researcher in Gerontology
20
Doing what is best
•
When residents experience acute illness, the preferences of family members
are a major consideration in the choice between more aggressive treatments
and palliative care
Lopez, 2007
•
Family members feel a great deal of uncertainty about the decisions they make
•
They fear that limiting treatment will mean less care for their loved one so they
give priority to life -sustaining treatments
•
We can help by discussing the wishes of residents and their families before a
health crisis occurs
•
“The experience of decision making can be a tremendous emotional burden for
family members, likened to an arduous, unwelcome journey over unfamiliar
territory filled with unrecognisable landmarks” Forbes et al, 2000, p.251
21
Beneficence
“Doing good”
Standard health care activities
including;
• effective pain and symptom
control
•
sensitive interpersonal
support
•
acknowledgement of the
person as a unique human
being to be respected and
valued
22
Non-maleficence
“Doing no harm”
• unnecessary physical pain
• unnecessary psychological distress
• insensitive truth-telling
• denigration of the individual
• continued aggressive life prolonging or cure orientated treatment not suited
to the patient’s need or wishes
• unnecessary or unwanted over sedation
• premature, unrequested or uninformed withdrawal of treatment
23
Justice
•
Concept of fairness or what is deserved
•
Describes what individuals are legitimately entitled to and what
they can claim
•
Sometimes justice may serve to limit autonomy; what the
individual wishes, chooses, or feels entitled to may not be
possible or allowable in the context of the society
24
Ethical discussions about end of life care
Nutrition and hydration
Palliative sedation
Limitation of treatments
25
Nutrition and hydration at the end of life
• Symbolism of food and fluid
• Fears of starvation
• Organs slow down in preparation for death
• Burden of hydration outweighs the benefits
• Little link between hydration and hunger and dry mouth
• Mouth care with familiar tastes
26
To feed or not to feed?
•
There is no evidence that artificial nutrition prolongs survival in advanced
disease
•
Studies showed that people in hospice care who refuse food and fluids
usually die a ‘good death’ within two weeks
Ganzani et al 2003
•
Further studies have shown that starvation and dehydration might also have
analgesic benefits produced by the generation of endorphins and the action
of ketones
•
There is no right or wrong answer
•
Each person and their significant others are unique and need education and
understanding. Compromise is important.
27
The ethical dilemma
•
Main argument is that it is unethical to let a person starve or thirst to death
Reality - the person is dying from a chronic incurable illness not dehydration
•
The person will suffer intolerable dry mouth and thirst
Reality- all dying people have a dry mouth
•
There is no correlation between the complaint of dry mouth and the
biochemical changes caused by dehydration
•
A dry mouth is not relieved by parenteral fluids but is by good and frequent
mouth care
28
Ethical dilemma
•
Fluids will not cause harm
Reality - in the course of the dying process the persons organs slow and
stop working therefore fluids accumulate . Can lead to or worsen
pulmonary oedema, lung secretions, ascites, lymphodema
•
Fluids will not bother the person
Reality - having needles sited is painful
They may be incontinent or require catheterisation
•
The relatives expect it
Reality - they need education to understand, they want compromise, they
need to know other ways to care
29
Palliative sedation – principle of double effect
•
Some dying people experience suffering as a result of symptoms that are
difficult or impossible to control
•
They can be offered palliative sedation in order to relieve or palliate
unusually difficult symptoms such as pain or breathlessness
•
There is controversy over whether this hastens death
•
The clinician must intend only the good effect, although some untoward
effects might be foreseen
•
The good result (e.g. relief of suffering) must outweigh the untoward
outcome (e.g. hastening death)
30
Symptom control at the end of life
•
Health workers are sometimes reluctant to administer medication to a
dying patient for fear of “killing them” but it is imperative good symptom
control is maintained
•
Medications for symptom control that cannot be taken orally need to be
continued subcutaneously and extra medication charted for
breakthrough symptoms
•
Anticipatory prescribing when residents are deteriorating allows nurses
to respond to patient distress without delay
•
Bereavement can be complicated if relatives have to see their loved
ones in distress
•
In ethical terms, the resident has the right to be freed from suffering
and the clinician has a responsibility to see that happens
31
Withholding or withdrawing treatment
•
No one is obliged to live by technological means – a competent person
may refuse any treatment
•
A treatment that is no longer effective in achieving its goal should be
stopped - this may serve to remove resistance to the natural dying process
•
It is assumed that once a treatment is started it cannot be stopped - this
has no ethical, medical or legal basis - if a treatment becomes futile with
time, or too burdensome without clear benefits, the ceasing of that
treatment must be considered
•
A doctor is not ethically obliged to provide a treatment that is unlikely to
benefit the resident
32
Home or hospital?
Why did Joe end up in the
emergency department?
Was it the right
place for him to die?
Many people die in acute hospitals rather than in their care facility
as they would wish when they get admitted with an acute illness
33
Care or cure
It is difficult to shift from a goal of recovery to a goal of comfort
Overly long periods of aggressive treatments are;
• burdensome to patients
• exhausting to family
• demoralising to clinicians
• difficult to justify for societies resources
How can we prevent this?
34
You are important too
•
Ethical dilemmas may challenge our own values and beliefs
•
Work as a team – need to trust and support each other
•
Good communication – share in decision making, confront difficult issues
in non-judgemental way
•
Share your feelings and concerns with other staff
•
Conflicts may be inevitable but should not be seen as negative but rather
an opportunity for growth and improvement
•
Have strategies to preserve emotional and physical health
35
Conclusion
Conclusion
The resident is the central figure in end of life
decision making
Life is a process with death as an integral part
of the continuum
Ethics, or principles of moral conduct, are not
fixed and static, but subject to change and
interpretation
Social, historical, cultural, racial, political,
professional and spiritual influences all shape
the ethical beliefs that affect the actions of
health care providers and residents and their
families
36
37