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Advance Care Planning

Advance care planning involves people thinking and talking about how they would like to be cared for in the future. Anybody can develop an advance care plan. However people usually plan ahead because they have a condition, such as dementia, that means that they may not be able to make their own decisions or clearly communicate their wishes in the future. It is completely voluntary; people do not have to have a discussion or develop a written plan if they do not want to.

Key points from the research:

  • advance care planning allows a person to have their wishes taken into account even in the advanced stages of their condition and at end of life when they are no longer able to make their own decisions
  • it works best when there is a supportive discussion with a health or social care professional so that people understand their condition and care options. This can also help to make sure that written advance care plans are clear and easy for doctors and other care providers to understand
  • advance care planning can help to reduce unnecessary emergency admissions to hospital and improve the quality of end of life care
  • advance care planning may help to ensure better use of health and social care resources.

Download Full Summary (including tables and references)

Evidence Snapshot

Does it work for people with dementia?

Reduced Hospitalisation
Tube Feeding
Place Of Death

Strength of evidence

Implemented in the UK?

What is Advance Care Planning?

Advance care planning discussions are very personal and individual. They often take place with the support of others such as a general practitioner (GP) or other health or social care professional, family members or the person’s family carer.

In England, if people choose to make an advance care plan they can write their wishes down in:

  • an advance statement, which can cover anything to do with future care such as the values that they want to guide their care, their thoughts on different treatment options or where they would like to be cared for. It can include all types of wishes, not just those about medical care.
  • an advance decision, sometimes called an advance decision to refuse treatment (ADRT). This is a decision to refuse a specific type of medical treatment in the future if the person loses the ability to make his or her own decisions. It is usually legally binding.

If they wish to, a person can choose somebody else to make decisions on their behalf if they are unable to make them in the future. This is called a Lasting Power of Attorney (LPA) for health and welfare. Other countries have similar arrangements for people wanting to develop an advance care plan although the documents and processes involved may be called different things.

It is best if advance care planning is carried out with people with dementia before they lose the capacity to make their own decisions and express their wishes. However where this is not possible, an advance care plan is sometimes developed with a family carer to help make sure that care is given in the way that is in the best interests of the person with dementia and in a way that the carer believes the person with dementia would wish.

There is further information on advance care planning in the booklet: ‘Planning for your future’ published by the National Council for Palliative Care.

Why is Advance Care Planning important?

As their illness progresses, people with dementia are likely to find it increasingly difficult to communicate. Planning ahead allows them to share their views on future care and what is important. It can be reassuring for family carers to know that care is being given in the way that the person would want.

Advance care planning can also help to reduce avoidable emergency hospital admissions and care that will not benefit a person at the end of their life. A supportive care approach (we call this palliative) to relieve discomfort and distress is usually appropriate for people with dementia in the late stages of their life. However, this type of approach is not always taken. Instead, people with advanced dementia often experience emergency hospital admissions and distressing medical treatments despite the likelihood that this will not improve or maintain their quality of life. Advance care planning can help people to die in the place they choose, which for most people is their own home or care home.

Does Advance Care Planning work?

It is difficult to assess how well advance care planning works because there is no single way of doing it and the experience of advance care planning varies from person to person, including how and when it takes place and which professionals are involved. There are also many different possible benefits that can come from having these discussions, some of which are hard to measure. As well as fewer hospital admissions, benefits can also include helping people to understand their health condition better and improved communication with health and social care professionals. A recent review of research on advance care planning (for people with a range of different health conditions, not just dementia), found that it can improve the quality of end of life care particularly when there has been a discussion supported by a health or social care professional rather than just completing documents. (1)

A number of studies have specifically looked at advance care planning for people with dementia and also identified positive benefits. For example, a large study in the United States found that people with severe dementia, living at home, who had an advance decision to limit treatment in certain circumstances, (called a treatment-limiting advance directive) were significantly less likely to die in hospital than those without an advance decision. Two other studies, one in Australia and one in Canada, found that people in nursing homes using the ‘Let Me Decide’ advance care planning programme spent less time in hospital and had fewer emergency admissions.

Giving people with dementia food and fluids artificially (this is called ‘tube’ feeding ‘) in their last weeks of life is not usually thought to be a good idea. It can be very distressing for people with dementia and their families and often requires hospital admission. It has also been shown that there are no clear benefits to ‘tube’ feeding in terms of the length or quality of life of the person or in improving their nutrition (2) A number of studies have found that people with dementia in nursing homes (3,4,5,6) and in hospital (2) who have an advance care plan are less likely to be ‘tube-fed’ towards the end of their life.

Another study in the United States found that family carers were more satisfied with the end of life care given to their relative when staff at the nursing home spent time discussing their relative’s advance care planning with them. (7,8)

Is Advance Care Planning cost-effective?

Advance care planning may help to ensure better use of health and social care resources. There are no studies so far that have looked at the overall balance between the different costs and benefits of advance care planning.(9) However, there are a number of studies that show that advance care planning can help to save hospital costs.(9) It is likely that this is by reducing time spent in hospital and unwanted treatments. Two of these studies involve people with dementia.(10,11))

Because community-based care is generally thought to be less costly than hospital care, and because people with dementia are also more likely to get the type of care they want, advance care planning is widely thought to offer good value for money (be cost-effective).

What people say about Advance Care Planning?

Two people talk on the Dementia Diaries website about why planning for the future is important to them:

Ann Scott talks about why Advance Care Planning is important for her:

http://dementiadiaries.org/entry/4810/advanced-care-planning-is-very-important-the-burden-of-my-future-is-not-put-on-my-family

Anne MacDonald talks about choosing to have a power of attorney in place before a crisis situation:

http://dementiadiaries.org/entry/3112/so-important-to-have-a-power-of-attorney-in-place-before-a-crisis-situation

Find out more about Advance Care Planning

If you would like find out more about planning ahead and how to develop an advance care plan there is further information on the following websites:

NHS Choices:

http://www.nhs.uk/Planners/end-of-life-care/Pages/why-plan-ahead.aspx

Alzheimers’ Society

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=143

Dying Matters

http://www.dyingmatters.org/page/planning-your-future-care

Marie Curie

https://www.mariecurie.org.uk/help/terminal-illness/planning-ahead/care-planning

It may also be helpful to read the booklet ‘Planning for your future’ published by the National Council for Palliative Care:

Resources

Further information on advanced care planning for health and social care professionals

Social Care Institute for Excellence: dementia gateway

https://www.scie.org.uk/dementia/supporting-people-with-dementia/decisions/advance-care-planning.asp

Advanced Care planning: a guide for health and social care staff

Organisations

Find out more about organisations that have information or offer support to people with dementia and their families.

Study

Garden et al., 2016

Before-after, no control 283 nursing home residents, 250 staff UK

Cost Effectiveness

Strength of Evidence

Study

Nicholas et al., 2014

Retrospective cohort 3,876 people age 65+, US

Does it Work for Carers?

Strength of Evidence

Study

Vandervoort et al., 2014

Retrospective cohort 101 nursing home residents, Belgium

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Livingston et al., 2013

Before and after, no control 120-bed nursing home, UK

Cost Effectiveness

Strength of Evidence

Study

Keily et al., 2012

Prospective cohort 323 nursing home residents, US

Does it Work for People with Dementia?

Cost Effectiveness

Strength of Evidence

Study

Vandervoort et al., 2012

Retrospective cohort 764 nursing home residents, Belgium

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Engel et al., 2006

Prospective cohort 148 nursing home residents, US

Does it Work for People with Dementia?

Cost Effectiveness

Strength of Evidence

Study

Caplan et al., 2006

Non-randomised controlled trial Three hospitals and 34 surrounding nursing homes. US

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Morrison et al., 2005

Cluster randomised controlled trial 139 nursing home residents, US

Does it Work for People with Dementia?

Concordance

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Volicer et al., 2003

Cross sectional, convenience sample 156 recently bereaved carers, US

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Mitchell, 2003a

Cross-sectional 186,835 nursing home residents, US

Does it Work for People with Dementia?

Tube Feeding

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Mitchell 2003b

Cross-sectional 1,057 nursing homes, US

Does it Work for People with Dementia?

Tube Feeding

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Meier et al. 2001

Prospective cohort, 99 hospital patients and their carers, US

Does it Work for People with Dementia?

Tube Feeding

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Ahronheim et al., 2001

Cross-sectional 57,029 nursing home residents US

Does it Work for People with Dementia?

Tube Feeding

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Gessert et al., 2000

Cross-sectional 4997 nursing home residents, US

Does it Work for People with Dementia?

Tube Feeding

Does it Work for Carers?

Cost Effectiveness

Strength of Evidence

Study

Molloy et al., 2000

Cluster randomised controlled trial, 1292 nursing home residents, Canada

Does it Work for Carers?

Strength of Evidence

References

1. Brinkman-Stoppelenburg, A., Rietjens, J.A., van der Heide, A., 2014. The effects of advance care planning on end of life care: a systematic review. Palliat Med 28(8), 1000–1025.

2. Meier Diane E., Ahronheim Judith C., Morris Jane, Baskin-lyons Shari, Morrison R. Sean, High Short-term Mortality in Hospitalized Patients With Advanced Dementia Arch Intern Med, American Medical Association (AMA); 2003, 594

3. Gessert CE, Mosier MC, Brown EF, et al. Tube feeding in nursing home residents with severe and irreversible cognitive impairment. J Am Geriatr Soc 2000; 48(12): 1593–1600.

4. Ahronheim Judith C., Mulvihill Michael, Sieger Carol, Park Pil, Fries Brant E., State Practice Variations in the Use of Tube Feeding for Nursing Home Residents with Severe Cognitive Impairment Journal of the American Geriatrics Society, Wiley-Blackwell; 2002, 148-152

5. Mitchell Susan L., Clinical and Organizational Factors Associated With Feeding Tube Use Among Nursing Home Residents With Advanced Cognitive Impairment JAMA, American Medical Association (AMA); 2010, 73

6. Md Susan L. Mitchell, Mph Dan K. Kiely, Gillick Muriel R., Nursing Home Characteristics Associated with Tube Feeding in Advanced Cognitive Impairment Journal of the American Geriatrics Society, Wiley-Blackwell; 2003, 75-79

7. Engel Sharon E., Kiely Dan K., Mitchell Susan L., Satisfaction with End-of-Life Care for Nursing Home Residents with Advanced Dementia Journal of the American Geriatrics Society, Wiley-Blackwell; 2006, 1567-1572

8. Kiely Dan K., Shaffer Michele L., Mitchell Susan L., Scales for the Evaluation of End-of-Life Care in Advanced Dementia Alzheimer Disease & Associated Disorders, Ovid Technologies (Wolters Kluwer Health); 2012, 358-363

9. Dixon J, Matosevic T and Knapp, M. 2015. Dixon, J., King, D., Matosevic, T., Knapp, M. 2015a. Equity in the Provision of Palliative Care in the UK. Marie Curie/ Personal Social Services Research Unit (PSSRU), London School of Economics and Political Science (LSE)

10. Molloy, D. William; Guyatt, Gordon H.; Russo, Rosalie; Goeree, Ron; O'brien, Bernie J.; Bédard, Michel; et al. Systematic Implementation of an Advance Directive Program in Nursing Homes JAMA, American Medical Association (AMA); 2003, 1437

11. Nicholas Lauren Hersch, Langa Kenneth M., Iwashyna Theodore J., Weir David R., Regional Variation in the Association Between Advance Directives and End-of-Life Medicare Expenditures JAMA, American Medical Association (AMA); 2011, 1447

About this summary

Author: Josie Dixon

Edited by: Helen Hayes and Adelina Comas-Herrera with support from the MODEM user and care group.

Thank you to members of the Dementia Diaries project for sharing their experiences.

Summary First Published: Saturday, July 16th, 2016

Summary Last Updated: Thursday, July 28th, 2016

The support of the Economic and Social Research Council (ESRC) and National Institute for Health Research (NIHR) is gratefully acknowledged. The views expressed in this publication are those of the author(s) and not necessarily those of the ESRC, NIHR or Department of Health.