1. The Rights of People with Dementia and their Carers
Professor Colleen Cartwright
Principal Director, Cartwright Consulting Aust P/L
Emeritus Professor, Southern Cross University

2. Context
Better living conditions/health care have led to increased longevity – this is a success story, and it has rightly been celebrated as such.
In addition, rapid technological development has allowed people who would have previously died to be kept alive for long periods of time, often through the use of such things as ventilators and PEG tubes.
But
These successes have led to practical, legal & ethical issues, in particular around end-of-life care and extending the dying process, including for the increasing numbers of people with dementia.

3. Fears and Concerns in the General Community Carers’ Stories
Loved one “left hooked up to machines until the very end. We couldn’t even get close enough to give him a hug and say goodbye”.
“Mum always said she wouldn’t want to be resuscitated if her heart stopped, but they wouldn’t listen”.
(Wife) “First of all he was stubborn when he was in hospital; he wouldn’t eat - he was just starving himself. They couldn’t get him to eat … so they had to force-feed him. They put a tube down his nose and then they had to tie him in the bed, because he kept pulling it out. He just didn’t want it”.

4. Community Concerns in Terminal Illness: Rank Order
FACTORS Q1 Q2 NT
Loss of Mental Faculties 1
Loss of Control 2
Loss of Independence * 3
Burden on Family 4
Loss of Dignity 5
Leaving Loved Ones 6
Protracted Dying 7
Extreme /Physical Pain 8
Death Itself 9
10/10

5. Confusion About what is/is not Euthanasia
Many problems stem from confusion over what is, or is not, euthanasia. This leads to:
Inadequate pain management
Inappropriate use of medical technology
Fear among health professionals of legal consequences of care provision
Poor doctor-patient communication
Disillusioned patients/families/carers

6. Common Beliefs
Some commonly held beliefs are that euthanasia includes:
giving increasing amounts of needed pain relief which may also have the effect of shortening the person's life; or
respecting a patient's right to refuse further treatment; or
withholding or withdrawing life support systems that have ceased to be effective or that will provide no real benefit to the patient
None of these is euthanasia

7. Definitions of Euthanasia
The World Medical Association defines euthanasia as "the deliberate ending of a person's life at his or her request, using drugs to accelerate death”.
Definition used in studies in Qld, NSW, NT & Europe:
Euthanasia is a deliberate act intended to cause the death of the patient, at that patient’s request, for what he or she sees as being in his/her best interests (i.e. Active Voluntary Euthanasia – AVE).

8. Giving Pain Relief Which May Also Shorten the Patient's Life
Often referred to as "the doctrine of double effect“ - primary intention is to relieve pain, secondary, unintentional effect may be the hastening of the person's death.
Accepted by most religious and medical groups, including those who strongly oppose euthanasia.
Not giving adequate pain treatment when needed may shorten life: patient may suffer complications such as life-threatening cramps or severe respiratory problems if severe pain is left untreated.

9. What Does The Law Allow? Pain control
Every person (competent or not) has the right to adequate control of pain and other symptoms, even at the risk of hastening death.
People with dementia are often denied adequate pain relief.
The Abbey Pain Scale is recommended for assessing pain in someone with dementia.

10. Inadequate Pain Relief: Carers’ Story
Very frail elderly man, fractured hip; admitted to NSW hospital; considered too frail for surgery.
He was clearly in agony – daughter requested pain relief /palliative care consultation; told no palliative care staff available on the weekend.
Nurses came to roll him – without additional pain medication; his screams drove his family from the hospital. On the third occasion he looked at his daughter with terror in his eyes and said “Not roll. Not roll”.
Daughter threatened the nurses with physical violence if they rolled him again – they didn’t!!
Maureen

11. Respecting a Patient's Right to Refuse Treatment (even life-saving treatment)
This is a legal and moral right possessed by every competent person, under both common law and, in some States/ Territories, under statute law relating to assault; also by non-competent patient (in Qld by AHD or Enduring Power of Attorney for health matters).

12. What Does The Law Allow?
Refusal of any/all treatment (and food/fluid) by the person themselves or by the person with EPoA for health matters (EPoA or SHA cannot refuse p/care or “normal” provision of food or fluids).
Refusal of artificial provision of food or fluids
Continuing with artificial nutrition and hydration in a person with advanced dementia can increase their suffering and prevent a peaceful death.
Refusal of antibiotics
The use of antibiotics does not necessarily improve the comfort of patients with advanced dementia (but may be required to reduce fever).
Provision of artificial nutrition and hydration is medical treatment, it is not normal provision of food and fluid, and – as with all medical treatment – it may legally be refused (and withheld or withdrawn).

13. “Normal” Provision of Nutrition & Hydration
Loss of the swallowing reflex is a normal part of advanced dementia, and of the dying phase of people who do not have dementia.
If a dying person does not want to eat or drink, this should be respected. (In Europe it is referred to as “putting down the spoon”). Even someone with advanced dementia might turn their head away or push away the food or the cup; this can be accepted as refusal.
Families often insist on AN&H – “if we could just get him to eat something he would get his strength back” - they need information/support & counselling. (It’s not OK to harm the patient in order to sooth the family).

14. Artificial Nutrition & Hydration
Finucane did a 30-year MEDLINE search of all trials of PEG feeding & found no evidence of positive outcomes for people with dementia re: improved survival, prevention of aspiration pneumonia, improved skin integrity, quality of life – but found strong evidence of negative outcomes, incl. site infection, aspiration pneumonia, weight gain, distress.
Providing artificial nutrition and/or hydration to someone in the dying phase of their life can not only increase their suffering but can prevent a peaceful death.
Research has found that AN&H interferes with the body’s production of natural endorphins that ease end stage of life, and that the body produces such endorphins even in people who are unconscious or have dementia.

15. Withholding/Withdrawing Life-Supports Systems
Used to be called "passive euthanasia”; general agreement that that term is unhelpful - it can lead to the inappropriate continued use of invasive technology.
Often it is not prolonging life, it is merely prolonging the dying process.
Removal of treatment that will provide no benefit to the patient is good medical practice. This is generally agreed to be when burden outweighs benefits – but “burden” and “benefit” should be from patient’s viewpoint.

16. Terminal Sedation
Recent, controversial addition to the debate - terminal sedation and its relationship to euthanasia.
Refers to use of sedative drugs to induce unconsciousness in terminally ill patients in order to relieve suffering, including anxiety, when other attempts at relief have failed. Includes withholding or withdrawing artificial nutrition/ hydration.
Some doctors have described Terminal Sedation as "slow euthanasia” and claim that it is ethically inferior to EU because it takes patients longer to die, with the potential for further suffering.

17. Planning Ahead- Legal Mechanisms
Advance Planning helps to address fears and concerns in relation to:
Financial Mechanisms
Enduring Power of Attorney (for financial matters).
Health/Personal Care Mechanisms
Advance Health Directive.
Enduring Power of Attorney (for personal/health matters).
Statutory Health Attorney.

18. Advance Care Planning
Is a process that allows you to make and communicate – in advance – decisions about your health care (including your medical and dental treatment) for a future time when you have lost capacity.
Ideally it involves a discussion between you, your health care provider and your carer/ family/ friends, about your values, beliefs and views about end-of-life care.
It also includes recording your health-care decisions.

19. Advance Directives
An Advance Directive - referred to as an Advance Health Directive in QLD:
Is a written document, allowing a person to make their wishes for future health care known.
Extends the current right of a competent person to refuse treatment to a future time when they may not be competent.
Is NOT a form of euthanasia, as it only allows actions which a person could legally consent to for themselves if they were competent to speak.
Only comes into effect when the person making it loses decision-making capacity.

20. After a Diagnosis of Dementia Advance Planning for Expected Changes
A diagnosis of dementia for you or someone you care for may cause a range of emotions, including grief, disbelief, anger, shock or even relief.
Knowing the diagnosis at an early stage allows time for setting up good supports and planning for expected changes as the disease progresses.
The person with dementia can participate in the planning process and ensure that his/her wishes for end-of-life care are known and documented.

21. Benefits of Advance Directives
Gives control back to patient.
Ensures patient’s wishes are known - patient’s own words.
Assists health care provider with decision-making.
Relieves family stress at time of trauma.
Gives security in relation to future events (allows person to live well now by taking away fear of end stage of life).

22. Barriers to Use of Advance Directives
Cty %
HPs
Don’t know how to 61 88
Don’t know enough about them 60 91
Prefer to leave decision to doctor 37 63
Don’t like to think about end-of-life issues 33 75
Prefer to leave decision to family 29 69

23. Enduring Power of Attorney -1
A competent person over 18 can appoint an Enduring Power of Attorney to make personal & lifestyle decisions and/or decisions about medical and dental treatment on their behalf, in case they lose the capacity to make own decisions.
Attorney:
Must be at least 18 years old.
Is usually a trusted relative or friend.
Attorney cannot be a person who, at the time of appointment:
Provides medical treatment or care to the person on a professional basis; or
Provides accommodation services or support services for daily living on a professional basis; or
Is a relative of one of the above.

24. Enduring Power of Attorney - 2
A person can appoint more than 1 attorney.
If more than 1 attorney is appointed, the principal needs to state how they will make their decisions (jointly, severally, serially, as a majority or any other combination).
Attorney must agree to the appointment, should understand the principal’s wishes and be prepared to carry them out.
Appointment must be in writing, in approved form.
Form must be signed by principal, attorney and witness (solicitor, barrister, JP).
Certified copies of form.

25. Recent study: Scenario (abbreviated)
55 year-old woman; diagnosed with MND 6/12 ago.
Taken unconscious to hospital after a car accident; now stable but still unconscious. Decisions needed about her medical treatment.
Husband listed as next-of-kin on previous hospital records but they have been separated for many years and do not see each other often.
For the last 5 years, the patient has lived with her same-sex partner.
The patient and her husband have two adult children, a son and a daughter.
Her son has Enduring Power of Attorney for her finances.
Her daughter has recently taken 3 months leave to care for her mother full-time.
Respondents were asked: If all 4 were present at the patient’s bedside, who would be legally entitled to consent to her medical treatment?
.Study I was involved in with my colleagues Prof Ben White, Prof Lindy Willmott, Prof Mal Parker, Prof Gail Williams,
of Medical Practitioners in 7 specialties most often involved in end-of-life decisions in Qld, NSW & Vic

26. Scenario - Results
29% overall gave correct answer; lowest correct response was in NSW, where 52% of medical specialists said “son” who had Enduring Power of Attorney
In NSW, Enduring Power of Attorney applies only to decisions about money and property and does not give that person authority to make healthcare decisions
STATE
Husband
Son
Daughter
Partner
Don’t Know
Correct
Qld
18%
15%
12%
31%
24%
NSW 8%
52%*
22%
10%
Vic
21% 7%
13%
36%
23%

27. What if there is no AHD or EPoA for Personal/Health Matters?
‘Statutory Health Attorney’ is the first readily available & culturally appropriate of:
A spouse (including de facto or same sex partner), providing the relationship is close and continuing.
A (non-professional) carer.
A close relative or friend, of the patient.
(Not Next-of-Kin and may not be the person the patient would have chosen to make their decisions).
Note: For a person in a residential aged care facility, (nursing home), the “carer” is not a staff member at the facility. Usually it would be whoever was the carer before the person went to the facility.

28. When Does a Person Have Capacity to Make A Decision (inc
When Does a Person Have Capacity to Make A Decision (inc. write an AHD or appoint an Attorney)?
Person is competent unless proved otherwise (a diagnosis of dementia does not immediately mean the person has lost capacity).
Person must understand the nature and the effect of the decision to be made – (case study).
Person must be able to communicate their decision in some way - not necessarily by speaking or writing - body language may be adequate, e.g. nodding/ shaking head.

29. Incapacity is Not: Ignorance
Eccentricity, cultural diversity or having different ethical views
Diagnosis of dementia – depends on the level
Communication failure
Bad decisions
Disagreeing with health care provider

30. Palliative Care
A palliative approach to care can be implemented very early after a diagnosis of dementia.
Where possible, establishing a relationship with the palliative care team early in the disease will assist efforts to monitor the patient’s progress and to know when additional support is needed.
Palliative care can be provided in the home, in the hospital or a hospice or in a residential aged care facility – emphasis is on quality of life, dignity and comfort.
It is important to understand that palliative care is not just for the very end of life, nor is it just for people with cancer or pain. Most patients and their carers/families can benefit from palliative care as they approach the end of life. If necessary, insist on the patient receiving a palliative care consultation and assessment. MAUREEN

31. Carers
A major stress among carers of people with dementia is not knowing what is the right thing to do and being afraid of doing the wrong thing.
Some of the stress can be relieved with appropriate advance care planning.
People with mild-moderate dementia should be supported to complete an AHD and to appoint an Attorney.
People with advanced dementia – who have not made substitute-decision making arrangements – may need to rely on a Statutory Health Attorney (spouse, carer, close relative or friend) to make health and lifestyle decisions on their behalf (Substitute Judgement, not Best Interests).

32. Other Rights of People With Dementia and Their Carers
Rights in the workplace:
Can’t be fired because of diagnosis of dementia alone but can be if you are unable to perform your role, even with reasonable changes to where or how you perform your work;
Employer is legally obliged to keep your diagnosis of dementia confidential.
Voting:
You do not have to give up voting if you are diagnosed with dementia. If you or another person think that you lack capacity to vote, you can notify the Electoral Commission.
Because capacity is decision-specific, you may retain capacity to vote longer than you retain other capacities, such as managing your finances.

33. Right to Access Superannuation
A person with dementia can access the money in their super fund early on compassionate grounds or in cases of severe financial hardship (e.g., for medical treatment, home modifications, palliative care, mortgage stress, or to care for a spouse or child) but not to pay for respite or residential care;
People with dementia may also be able to access their funds through insurance provided as part of their superannuation, e.g., because of terminal illness or total and permanent disability
Travel
Some airlines, including Qantas, offer a reduced air fare for both the customer who requires assistance and their carer; conditions apply. For flights to/from the US, it’s possible – if requirements are met – for accompanying person to travel free of charge. (Check Qantas website)

34. Questions?