Quality care at end of lifePeople with dementia

Alzheimer Europe recommendations

(Sigurd Sparr, Norway)

The working group:

• Set up in 2007 (Estoril,Portugal)

• Ana Bernando, Mary Cosgrave,Iva Holmerova Sabine Jansen, Birgitta Martensson, Barbara Pointon and Catalina Tudose

• Chaired by Sigurd Sparr, Honorary secretary of Alzheimer Europe

• Dianne Gove AE, has done the writing and extensive work, including litterature review

The report

• Published october 2008

• Gives a summary/recommendations for -people with dementia -carers -health care professionals -policy makers/the state

Executive SummaryRecommendations

• 8 points about ”People with dementia”

• 7 points about ”Carers”

• 25 points about ”Health care professionals”

• 15 points about policy makers/ the State

Clarification of terms:• ”End of life” being a matter of days or weeks

before the actual moment of death• The document deals with

-people with dementia who reach the end of life and die from some other identifiable condition such as cancer, before reaching the final stage of dementia -people who reach end of life and die of complications of dementia, like end-stage dem.

Palliative care• Aims to improve quality of life

• Does not aim to prolong life

• Strives for a good death

• May be used as end-of-life care, but also at other stages of disease (in conjunction with other therapies)

• Offers a support system to help patients live as actively and good as possible until death

Som guiding principles• The autonomy of the person with dementia

should be respected at all times• Capacity is not an all-or-none phenomenon• Alzheimer Europe recommend a written

advance directive for people with dementia – or at least that some advance planning is done

• Respecting the dignity of the person with dementia and provide the best quality of life possible, even though dignity is relative

Carers` needs• Carers need support, especially in final stage.

The kind of support depends of the condition of the person with dementia, and whether the person with dementia is at home or in nursing home , but might typically involve assistance with personal care, hygiene, feeding, incontinence etc. A live-in professional careworker would therefore be ideal

Where care is provided, and the kind of support needed

• People with dementia should have access to palliative care service at home, in residential care settings and in palliative care units

• Measures should be taken to prevent removal of the person with dementia to hospital

• All staff should be trained in palliative care and the specific needs of people with dementia

More about care and support• Measures should be taken to enable carers to

stay with the person with dementia in the period directly preceding death

• The environment is important wherever care is provided, attention must be on lighting, noise level,furnishings, room temperature etc.

• It is also important to show respect, by addressing in a proper way, knock on doors etc

Enhancing well-being• Respect personal preferences

• Ensure that the patient is safe

• Visits from family and friends should be encouraged (in residential care settings)

• People with dementia should be supported in expression of their emotions

Communication• Attempts should be made to communicate with

people with dementia and to inform them about relevant care issues

• Whenever possible, this should be done in the person`s own mother tongue

• Health care professional and informal carers must be trained in communication.

• Ensure effective communication between healthcare professionals, and informal carers

Spiritual care• Spirituality should become an integral part of

the care programme

• Health care professionals should try to take a spiritual history of the person with dementia, with the help of carers if necessary.

• Nursing care staff should be attentive to peoples beliefs and customs, so as to avoid unwittingly causing distress.

Cultural issues and minority groups• Palliative care providers should be aware of

and respect the cultural beliefs and practices of people with dementia and their carers.

• Gay and lesbian partners who are carers should be treated as next of kin are treated, as partners in care, and therefore involved in end-of-life decisions.

Guidelines on specific care issues• Pain management• Feeding and swalloving problems• Constipation,diarrhoea and incontinenc• Infections (pneumonia)• Dehydration, mouth care and skin care• Restraint and falls,body temperature, sedation• Difficulty breathing• The process of dying and after• Grieving and mourning

Pain• Assessing pain is important but often difficult.

Informal carers should be consulted, and pain scales need to be further developed. The cause of pain must be investigated.

• Treating pain. Management should cover discomfort, distress and emotional pain as well as physical pain

• The three-step ladder(WHO)should be adapted

Pain (2)• Doses of analgesics (and all drugs!)should be adapted

to weight• Health care professionals should take necessary time

to explain to carers about use of strong analgesics and the risk of shortening life, as well as about loss of awareness.

• Health care pofessionals should ensure that correct dose is given in order to achieve the right balance between pain relief and awareness.

Feeding and swalloving• There are some practical advice about how to

help a person in end-stage dementia to eat, such as to be seated in an upright position, not feed when he/she is drowsy, alternate food and drink, encourage frequent swallows, use drinks with prescribed thickeners and so on (”good nursing”)

Feeding (2)• Tubes and PEG`s for artificial hydration and

feeding should normally not be indicated for people with end-stage dementia

• A PEG should only be used if it would improve the quality of life of the person

• Professional carers should take the necessary time for manual feeding

Feeding (3)• Families should be informed about the pros

and cons of tube feeding and consequences of withholding food and liquid

• It should be made clear that the person is dying as a result of dementia, not from starvation

• Decisions about feeding should be taken well in advance

Constipation, diarrhoea, incontinence

• Consider discontinuing certain medication

• Permanent catheters for urine should not be used

• Use of incontinence pads should be combined with good skin hygiene.

• Sufficient staff to change pads regularly!

• People with dementia should never be deprived of fluids in an attempt to control inc.

Pneumonia and infections• Treating with antibiotics if regarded as to be of

benefit and provide comfort. (Not aiming at prolonging life)

• Must consider the burden of intravenous lines and the occasional necessity to use restraint to make treatment possible.

• Body temperature is not a good marker for infections, and hyperthermia can occur without infections

Sedation• Anti-psychotic drugs should be used with

caution. (as littel as possible)

• Other methods should be considered to calm the person and reduce agitation or distress (i.e. quiet talking, eye contact from a smiling, reassuring face, gentle stroking of hands, feet and face, playing music etc.)

Difficulty breathing• Carers should be taught how to manage mild

breathlesness (sitting the person upright, opening a window, using a fan, providing reassurance etc)

• Professional carers should consider additional measures, and a specialist could be consulted.

The process of dying and after• Doctors should estimate the predicted time of

death in collaboration with those closest• Carers should be informed in advance about

the kind of symptoms they might observe• Privacy should be provided• Measures should be taken to ensure that carers

have the oppurtunity to be present during the last moments of life of the person with dementia

The process of dying and after (2)• In order to ensure that the dignity of the person

with dementia is respected, certain care issues should be considered and planned in advance.

(How the person is dressed, who is present, whether the person is in bed etc)

The beliefs and traditions of individuals should be respected before, during and after death of the person with dementia

Grieving and mourning• Carers, relatives and close friends should be

provided with support following the death of the person with dementia

• Such support should not be limited to the period following death, but be available at any time that it is needed

• Appropriate ways to deal with delayed grief and mourning should be investigated.

A few ethical issues• Personhood

• Autonomy and capacity

• Beneficence and non-maleficence

• Justice/equity

• Cultural issues linked to priciples of bioethics

• Withholding and withdrawing treatment

Ethical issues (2)• Futile or over-zealous treatment

• Dilemma between saving life and respecting patient`s wishes

• Discrepancy between current and former wishes

• Research

• Euthanasia