2. Learning outcomes Understand ethical definitions
Explain what is meant by an ethical issue
Describe the responsibilities of health professionals
Give examples of ethical issues we may face
Explain the decisions made prior to withholding or withdrawing treatment.

3. Models of care Review models as per Essence of Palliative Care
We need to be aware of different models of care. Living and working in New Zealand we are mindful to acknowledge Te Whare Tapa Wha, a Maori health model, which demonstrates the importance of the whole person and their family/whanau This holistic model of care and the total suffering model complements the W.H.O. palliative care definition and aligns with the palliative approach and holistic care.
These models will be very important as we discuss resident and family choices.

4. 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
Take time to revisit the cultural beliefs of the group and how they may impact on decision making.
The culture of the organisation will influence the decisions made.
Rituals may involve diet, beliefs and practices around death and dying. How do each individuals rituals impact on the residents?
Consider technical language as well as English as second language or no knowledge of English.
Consider lack of language in patients with dementia who have lost their ability to communicate with language.
Some families have a matriarch or patriarch that must be the decision-maker and communicator.
Advocacy role of family for dementia patients. EPOA.
Culture is the prism through which we see the world
Cultural perspectives will have the major influence on our attitudes, values and beliefs around end of life care.
Within any cultural group there is a wide range of similarities and differences in the rituals and meanings associated with illness, dying and death
The role of the elderly in different cultures also varies widely.
It is easy for health workers to ignore ethnic and cultural differences when they are part of the dominant culture
Asking the resident and their family about their beliefs and values is a way to establish their personal preferences and gives the resident a sense of control.
Lum K, Radbruch L, European Association for Palliative Care, 14 Nov 2006 4

5. 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
Similar discussion to previous slide but focusing on spirituality and what it means for them.
Members of the team need to trust and support one another. Good communication among the team is key. Conflicts may arise and should not be seen as negative but rather an opportunity for growth and improvement.

6. Definitions of terms Ethics
Do not resuscitate (DNR) or allow natural death (AND)
Informed consent
Advance care planning
Advance directives
This slide is to ensure the participants understand the terms that will be used and they are covered in more detail in future slides
Ethics, also known as moral philosophy. It addresses questions about morality that is, concepts such as right and wrong and justice. Every society has developed ideas of what is ‘right’ behaviour and these values are demonstrated in the behaviour it sees as ethical. Different societies hold different values and this can lead to ethical dilemmas eg: one society may regard truth telling as fundamental to good relationships and therefore assume it presence, while another may value amicable relationships more highly.
Do not resuscitate: when cardio-pulmonary resuscitation is not indicated due to the resident’s health status or when a resident requests that they not be resuscitated then a ‘do not resuscitate’ order will be written
Allow natural death : A kinder, gentler approach to DNR
Positive action of what we ARE doing rather than what we are NOT going to do
Informed Consent: Inherent in the principle of autonomy is the right to information and truth disclosure in order for the person to be able to make wise choices. Informed consent is a challenge as a person must be competent to make such a decision. Informed consent does not mean convincing residents to do what we want but rather for them to have the right information and time to consider it and discuss it with their support people and for them to then tell us what they want.
Advance care planning: await MOH
Advance directives: await MOH

7. 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
Ask the participants to identify any ethical dilemmas that they have observed.
withholding or withdrawal of treatment such as hydration, antibiotics etc
truth telling
resuscitation
euthanasia
symptom control at the end of life – reluctance to administer medication
palliative sedation

8. AND is a positive choice – not last resort
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
In a time of crisis, negative phrases are deemed less clear then positive phrases
Deciding on NFR/DNR status for close family members hurts and family are left overwhelmed by feelings of guilt that maybe they have made the wrong decision.
They are being asked to NOT do something rather than to DO something and they worry that their loved ones will be left with no care at all.
Where AND is being used these conflicts are not as evident for families.

9. AND has caused a great deal of debate
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
In a time of crisis, negative phrases are deemed less clear then positive phrases
Deciding on NFR/DNR status for close family members hurts and family are left overwhelmed by feelings of guilt that maybe they have made the wrong decision.
They are being asked to NOT do something rather than to DO something and they worry that their loved ones will be left with no care at all.
Where AND is being used these conflicts are not as evident for families.

10. 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
Again further explanation of definition.
IMPORTANT: Need to emphasise the point that NOT ALL residents will want to discuss dying or their illness and that should be respected. We need to assess how much information they would like.
However many will want as much information as possible for them to make informed choices about their medical treatment. The resident needs more information about the natural history of the condition as well as the risks and benefits of treatment in order to be able to participate in the process and they need time to consider their choices.
The goal of truth telling in medicine is to achieve therapeutic usefulness not to cause trauma and distress.
It is generally agreed that a person does not need to have complete competence for managing his or her own life but still may be able to maintain capacity for understanding limited treatment options.

11. 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’
Familiarise yourself with the documents so you can lead a discussion with participants
Taken from MOH consultation document which is available on the Ministry of Health’s website:

12. 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
Making ethical decisions is about carefully weighing up the benefits and burdens and trying at all times to honour and value the resident. When cure is not possible, the balance between benefits and burdens should shift to greater consideration of the burden side.
Discussion about quality of life with participants – what do they view as quality reminding them that what may be poor quality for them may in fact be of great value to the resident. Emphasising quality of life and value and meaning are very individual and the importance of talking to residents about their meaning of life and what they see as quality. This could lead to discussions about consideration of relationships, confidentiality, spirituality, the relief of suffering, rights and responsibilities ….
In end-of-life care, time is limited and so these discussions need to be understood as early as possible and many older people have been thinking through what the end of their life will be like for sometime as they have watched friends die. Spontaneous unthoughtful reactions must be avoided.

13. 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
Thinking about end of life care is extremely difficult for both patients and families. Everyone is not always on the same page It is helpful to consider choices when no-one is under pressure.
It is an important time to develop partnership between the patient family and health professionals to ensure that we have established how much they wish to know and to provide answers to their questions.
This could be a time to have a discussion with participants about their thoughts about death. This could be done in small groups so they do not feel intimidated declaring their own beliefs.

14. 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
Could discuss a resident that they are caring for presently and what they have observed.

15. 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
Self explanatory – introduction to principles.

16. 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
Encourage the participants to document or at least to talk to another team member if they observe something that they think is an ethical issue. Talk about developing therapeutic partnerships with resident, family and other team members.
Remind them COMMUNICATION IS THE KEY to developing therapeutic partnerships and managing ethical issues.

17. 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

18. 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
RESPECT FOR AUTONOMY recognizes the right and ability of an individual to decide for himself or herself based on his or her own values, beliefs and life span. This implies that the resident may choose a treatment that might differ from the advised course of care. The resident's decision should be informed and well-considered, reflecting his/her values. It is acceptable, for example, that a resident refuse certain therapy according to his own beliefs. Many factors interfere with the expression and appreciation of the resident's preferences: compromised competence of the resident, stress of illness, comprehension difficulty, etc. Respect for autonomy implies truth telling and exchange of accurate information about status, goals of care, options and expectations after we have established how much they wish to know and discuss.

19. 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
This is part of establishing autonomy.
“Strongly held ethical values in western medicine involve individual patient rights and respect for autonomy. However our medical system cares for patients from a variety of religious, cultural, ethnic, or philosophical backgrounds, in which other moral values may take precedence over medical decision making.” Stagno et al, Seminars in Oncology Vol27/No

20. 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
A good slide for some open discussion about what the participants feel

21. 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
Consider the family when you ask them to make all the decisions – discuss.

22. 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
BENEFICENCE requires that the physician prevent or remove harm, while doing or promoting good. It is the most commonly used principle in the application of care. It implies that the health care team should do positive acts in maximizing the benefits of treatment. Examples include: delivering effective and beneficial treatments for pain or other symptoms, providing sensitive support, and assisting residents and families in any way possible.

23. 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
NON-MALEFICENCE supposes that "one ought not to inflict harm deliberately." Violation of this concept may include offering information in an insensitive way, providing inappropriate treatment of pain or other symptoms, continuing aggressive treatment not suitable to the patient's condition, providing unwanted sedation, or withholding or withdrawing treatment.

24. 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
JUSTICE relates to fairness in the application of care. It implies that residents receive care to which they are entitled medically and legally. Justice can be translated into "give to each equally" or "to each according to need" or to "each his due." Different theories of justice debate what is "due," "equally," or "priority." Organ transplantation, selection in the emergency room or admission to the inpatient or outpatient hospice unit are applications of this principle. Who should have priority? The principle of justice implies a consideration for common good and societal considerations.

25. Ethical discussions about end of life care
Nutrition and hydration Palliative sedation Limitation of treatments
Questions to ask ourselves as we make decisions
Will I provide benefit in providing this treatment (beneficence)
Will this treatment cause greater discomfort eg inserting needles … (non maleficence)
What are the residents/family/whanau preferences (autonomy)

26. 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
Talk with participants about the symbolism of food and fluid for them.
People who die at home and in hospices do not generally receive artificial hydration whereas in hospitals and RCF this is becoming common practice – what do people think about this?
The issues to be considered vary according to whether the resident is in the dying phase of their illness. If they deteriorate rapidly or unexpectedly which results in inability to take oral fluids then a full assessment needs to be made and reversible causes may need to be treated appropriately eg hypercalcaemia may mimic dying but is reversible with bisphosphonates and artificial fluids or if the resident has gastroenteritis then they may need artificial fluids as they recover from this.
The following slides answer the issues that may arise at the end of life.

27. 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.
Legally artificial nutrition and hydration is a medical treatment that may be refused like any other treatment.
Artificial nutrition and hydration does not offer the sensory rewards, social interaction and comforts that come from the pleasure, taste and texture of food and fluids. Clinical staff – not the resident themselves – control how much will be “eaten”
Refusal of food and fluid is a natural part of the dying process.

28. 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

29. 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

30. 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)
Palliative sedation can cause distress amongst members of the care team and family who may view it as a form of euthanasia.
The reason for using it needs to be clearly explained to the participants. It is for the relief of intractable suffering that cannot be managed with other medications. It produces sedation in the imminently dying person. It is often misunderstood to mean sedation that brings about the terminal event. Death IS NOT THE INTENT. Its sole purpose IS RELIEF OF SUFFERING
Rule of double effect:
the act must be considered good or at least morally neutral
the intention is only the ‘good effect’ and not the ‘bad effect’

31. 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
Self explanatory

32. 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
Advances in medicine mean that an increasing number of interventions must be considered in the context of palliative care eg: ureteric stenting, PEG feeding tubes etc Just because they are available does not necessarily mean they are appropriate.
Personal autonomy and the right of self – determination are the basis of the right to refuse treatment. They DO NOT however grant the person the right to demand treatments that the responsible doctor regards as not clinically indicated whether that be antibiotics or renal dialysis.
The goal of palliative care is to maintain quality of life while neither hastening nor postponing death. Whether it is appropriate to offer, withhold or withdraw a particular treatment depends on what is in the residents best interests, that is the balance between possible benefits and potential risks. Futile treatment with no chance of benefit is NEVER justified.
Families at times find this difficult to understand and need sensitive communication and support as decisions are made. It often requires compromise and time. Patient centred care must not, cannot exclude the relatives. Development of a trusting relationship with the resident and family is essential for these discussions and advance care planning will make them very much easier.

33. 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
Joe has end stage heart disease. He has had several acute exacerbations of his symptoms and is aware that he may die suddenly at anytime. He has clearly stated in an advance care plan that he should not be taken to hospital and wants to die at the RCF in his own bed. He has an acute exacerbation and becomes very breathless and distressed at the time his daughter is visiting. She demands that her father be transferred to hospital immediately and calls an ambulance. Jo is too unwell to advocate for himself and he is transferred to hospital semi conscious where he is transferred to the intensive care unit and intubated and put on a ventilator. The medical director of ICU decides that continuing ventilation is inappropriate and the family agree that he really shouldn’t have come to hospital. He is taken off the ventilator but dies in hospital about 2 hours later.
Discuss this scenario.
Is there another way this could have been managed?
Was this the right place for Joe to die?

34. 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?
Partnership
Shared decision making
Having the difficult conversations
Preferences for care
These discussions should happen early so the shift in goal is not made in a time of crisis.

35. 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
Talk through the importance of caring for themselves as ethical issues can cause a great deal of distress to the care team as well as residents and families. This will be covered in more detail in a future session.
Remember that dealing with ethical issues is not just a matter of arriving at the right or legal decision it is a ‘process’. It is possible to arrive at a clinical decision which is ethically sound but which leaves the residents, families and clinical staff distraught if the process of arriving at the decision has not been carried out properly.

36. 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