Ethical issues in end stage dementia care

Changing minds: Wellington 14 Aug 09

Associate Professor Rosalie Hudson, RN Dip Arts, B App Sci, B Theol, M Theol, PhD

Consultant/Educator in palliative care, aged care, dementia, spirituality & ethics

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Advance care planning

http://www.palliativecare.org.au/    

Planned

discussion re dementia diagnosis & outcome

asap

after admission 

Involve

patient/resident & family in care planning (where consent is gained)

Include

setting of goals & timely review

Develop

a partnership of trust

Emphasise

the person with dementia has

rights

for their

wishes

to be respected 2

A palliative approach

 Dementia is a life-threatening, incurable disease  Therefore, the WHO (2009) definition for palliative care applies ‘People dying from dementia have symptoms and health care needs comparable to those dying from cancer, including 64% with pain’ (Commonwealth, 2006, p. 62).

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Euthanasia

Sparked by a need for:  assurance that pain and suffering will be relieved  individual end-of-life decisions to be respected  the person with dementia to articulate care preferences for circumstances in which they may no longer be able to express their wishes.

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Changing perceptions

 

Let’s do all in our power to change the perceptions (in governments, health care, community) that assisted suicide is the only option for people dying with dementia.

Let’s raise the confidence that in our care homes, etc., people dying with dementia will receive compassionate, evidence-based care for all distressing symptoms and die with their wishes respected

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Resuscitation

(Therapeutic Guidelines Palliative Care, 2005, p.23)    CPR is primarily for people with cardio-respiratory problems.

The success rate of CPR is low even in previously healthy individuals. In the presence of serious illness, it is universally poor.

The availability (or non availability) of CPR should be discussed with resident/family on (or before) admission  ACP includes wishes about intrusive treatments 6

CPR

Volicer, L. (2008)  Injuries + ICU environment cause more discomfort and suffering   Death soon after CPR deprives dementia patients & families of a dignified death ‘CPR should be performed only if it is specifically requested by the surrogate of patient who is well informed about the success rates & medical consequences’ 7

Mechanical resuscitation or restoration of life?

       Intuition based on

knowing

the person Finger on the pulse of the situation Identifying the ‘missing beat’ Sensing when ‘pressure’ is raised Detecting when the person is ‘flat’ Intervention

while the heart is still beating

Code: emergency OR

humanity

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Alternatives to hospitalisation

    Crisis plan:

Mr Jones (Guidelines, p. 59)

Would this work for your context?

What would you include in the crisis plan?

What other patients/residents’ conditions would benefit from a crisis plan?

 What are the ethical issues when patients/residents are hospitalised against their wishes?

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Nutrition & dehydration

Volicer, L. (2008).   Hand feeding should be provided until the beginning of the dying process ‘Reports from cognitively intact patients with cancer indicate that dying people do not feel hunger and thirst’   Discomfort is usually caused by dry mouth Meticulous mouth care is an

ethical

issue 10

PEG feeding

Volicer, L. (2008).

      Does not prevent aspiration Might

increase

aspiration pneumonia Does not increase survival Does not prevent or improve pressure ulcers Does not reduce risk of infections Does not improve functional status or comfort 11

Infections

Volicer, L. (2008).

 UTI, URTI, LRTI, cutaneous, GI tract, eye; are ‘almost an inevitable consequence of advanced dementia’ due to decreased immune response  Swallowing difficulties leading to aspiration pneumonia: prevention =

oral hygiene

 Treatment of infections CAN be beneficial especially if provided

without hospitalisation

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Duty of care

‘Neither the law nor any professional ethical code defines “duty of care” in such a way as to require providers to give futile or inappropriate treatment, or to compromise pain and symptom relief.

A provider’s primary duty is to the patient, and those duties owed to all other parties are secondary’ (Therapeutic Guidelines Palliative Care, p.27)

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Complementary care

 Wheel the bed/chair into the person’s preferred location, e.g. open air or sunshine    Encourage families to discuss creative options for visiting Maintain ‘conversation’ (including humour) Massage, aromatherapy, physiotherapy, music, pets, children  Favourite food/drink/smells/sounds/sights 14

Best practice care when death is imminent

 Early and regular communication with families so that, when death is imminent, the goals and expectations have been established.

  Time set aside (even 10-15 mins) for a family meeting can save time later and prevent regrets, for both staff and families. Keep the communication open: ‘Is everything okay? Do you have any questions or concerns?’  Avoid false hopes and cheery platitudes!

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Whose decision?

   Mr D, 94 y.o with dementia & co-morbidities Family noticed deterioration, but ‘fobbed off’ by staff Mr D constantly calling out ‘Help me, help me’ (as he had done for 3 years)   Bed-bound, contractures and bedsores Family requested GP intervention 16

Whose decision (cont’d)

    GP ordered (a) comfort care (b) antibiotics and other meds ceased, (c) morphine 5-10 mg 4 hrly

prn

 Nursing records: 6 doses of morphine given in last 6 days of Mr D’s life =

25% of permitted dose

Some days: morphine given 2-3 times Other days: no morphine given No clear reasons for either decision!

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Pain is an ethical issue

  Pain is now regarded as the 5 th vital sign   Pain management is a

human right

for everyone

;

not a luxury for some

‘Pain perception and processing are not diminished in Alzheimers disease’

‘Treatment of pain

inadequate in this highly dependent and vulnerable group’

(Cole et al, 2006) 

There is no place for prn medication in the context of chronic/persistent pain

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Is it ethical?

  What is in the person’s best interests?

Do staff understand ‘duty of care’ within the context of comprehensive care planning?

 Has the dying person completed a ‘statement of choices’ form and is it

current

?  Does the care team, including dying person and family, agree on the

goals of care?



Benefit vs. burden.

Is the proposed treatment likely to be a

benefit

or a

burden?

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Changing minds through policies

    Humane,

workable

policies Conveyed to

all

stakeholders (inc GPs) Based on latest evidence Regularly reviewed

Examples:

CPR & resuscitation, management of pain, ACP, care of body & belongings after death, partnership with palliative care service, in-service education 20

The key to changing minds?

Education & role modelling

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Changing minds by your actions

A tale from ancient folklore

(cited in de Beauvoir’s

The Coming of Age)

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Dame Cicely Saunders

How people die remains in the memory of those who live on

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References

Naomi Feil & Gladys Wilson

‘There is a bridge’

http://www.memorybridge.org/videos.php

De Beauvoir, S. (1972).

The coming of age

(P. O'Brien, Trans.). New York: Putnam.

Cole, L Farrell, Duff, et al ‘Pain sensitivity and MRI pain related brain activity in Alzheimer’s disease.

Brain

(2006). Hudson, R & O’Connor, M (2007)

Palliative care and aged care.

Ausmed Publications: Melbourne.

Therapeutic Guidelines Palliative Care, 2005, p.23

Volicer, L. (2008). End-of-life care for people with dementia in long-term care settings.

Alzheimer's Care Today

(April June 2008), 84-102.

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Comments/queries welcome

[email protected]

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