Advance care planning

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Advance care planning is a process that enables individuals with decisional mental capacity to make plans about their future health care.[1] Advance care plans provide direction to healthcare professionals when a person is not in a position to make and/or communicate their own healthcare choices. Advance care planning is applicable to adults at all stages of life.[2] Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care.[3] Older adults are more directly concerned as they may experience a situation where advance care planning can be useful. However, a minority use them. A research conducted in Switzerland with people aged 71 to 80 showed that better knowledge on advance care planning dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.[4]

The main components of advance care planning include the nomination of a substitute decision maker, and the completion of an advance care directive.

Background

Advance care planning is applicable to all adults in all stages of life.[2] Advance care planning aims to allow people to live well, and when death approaches, die in accordance with their personal values.[5] Advance care planning is only applicable when the individual cannot make and/or communicate decisions about what they want in relation to their healthcare.[6] If advance care planning has occurred, patients who have lost capacity or the ability to communicate or both, are able to continue to have a say in their medical care.[7] This has been shown to improve end of life care, and provide improved outcomes for both patients and their surviving relatives.[3]

While applicable to all stages of life, it is particularly applicable to perioperative planning and end-of-life care decision making, since approximately 1 in 4 people lose decision making capacity when approaching the end of their life.[8][9] Results of a systematic review indicate there are several prognostic indicators to help identify patients who may benefit from advance care planning discussions while still in the primary care setting.[10]

Although ACP is potentially appropriate for nearly all adult patients, given the realities of a busy practice, it would be useful to have a system for identifying patients with a more limited prognosis.

Federal and state legislation in the US,[11] Australia,[12] Canada[13] and the UK[14] supports the right of patients to refuse unwanted medical treatments. People can also express their preferences through written advance directives or by advising their appointed substitute decision maker about their wishes for when they are unable to make or communicate these decisions/wishes themselves.

Components

There are two methods by which the communication of an individual's preferences can be known. These are:

  1. the appointment of a substitute decision maker, and
  2. the completion of an advance care directive or similar document.

Findings from a systematic review suggest the value and importance that various types of decision aids have for patients to use and help clarify their goals.[8]

Substitute decision maker

Main article: Surrogate decision-maker

A substitute decision maker makes decisions on behalf of an individual only when that individual does not have the capacity to make/communicate decisions for themselves.[15]

There are a number of methods by which a substitute decision maker can be identified. The ideal method is the appointment of a person using a statutory document. In the absence of a statutory document the substitute decision maker may be a "person responsible" as listed in order of authority in legislation.[15]

A substitute decision maker can be chosen by an individual following completion of relevant paperwork, can be assigned to the person by law in the absence of a chosen substitute decision maker (e.g. family member or carer), or can be appointed for the person (e.g. guardian appointed by a guardianship tribunal).[16]

Substitute decision makers make decisions based on the principles of either substituted judgement or best interests.[2] Substituted judgement is when the substitute decision maker arrives at a decision based on the best approximation of what they believe the person would want. This decision should be informed by both the known wishes of the person and the best available healthcare advice.[17] Best interests decision making requires the substitute decision maker to focus on the patient's best interests.

Many, but not all, jurisdictions have legislation supporting the appointment of a substitute decision maker through a statutory document. They have different names depending on the jurisdiction:

Jurisdiction Substitute Decision Maker Type
Australia Australian Capital Territory Enduring Power of Attorney [18]
New South Wales Enduring Guardian [19]
Northern Territory N/A
Queensland Enduring Power of Attorney [20]
South Australia Medical Power of Attorney [21]
Tasmania Enduring Guardian [22]
Victoria Medical Treatment Decision Maker [23]
Western Australia Enduring Power of Guardianship [24]
United Kingdom Lasting power of attorney - health and welfare [25]
United States Health care proxy
Canada Newfoundland and Labrador Substitute decision maker [26]
Nova Scotia Delegate Decision maker [27]
New Brunswick Power of Attorney for personal care [28]
Prince Edward Island Health Care Proxy [29]
Quebec Mandatary [30]
Ontario Power of Attorney for Personal Care [31]
Manitoba Health Care Proxy [32]
Saskatchewan Health Care Proxy [33]
Alberta Healthcare Agent [34]
British Columbia Temporary Substitute Decision Maker [35]
Yukon Territory Health Care Proxy [36]
Northwest Territories Health Care Agent [37]
Nunavut N/A

Advance care directives

Main article: Advance health care directive

An advance care directive is a document detailing an individual's health care preferences. This may include personal values and life goals, describe circumstances the person would find unacceptable, identify preferences relating to specific medical interventions, or a combination of these.[2]

Advance care directives may be written on specifically designed forms, but can also take the form of a written letter or statement.[38] Inclusion of a doctor in the completion of an advance care directive will assist in ensuring that an individual's wishes are clear and written in a manner that is easy for substitute decision makers and/or medical staff to interpret and follow them in the future. Having a physician witness the document will reinforce this by showing future medical staff that the document contains information about informed decisions due to the assistance of a physician.[39]

Advance Decisions to Refuse Treatment (United Kingdom)

Some countries do not use the term 'directive', due to advance statements and/or advance care plans not usually having the legal standing to enforce a directive (for instance, a patient cannot direct a doctor to give him a specific treatment at a later time-point i.e. when she/he loses decisional capacity). In the United Kingdom, Advance Decisions, or Advance Decisions to Refuse Treatment (short: 'ADRT') have a legal standing under the UK Mental Capacity Act (2005). They can be written down and signed by patients. Such an ADRT must be specific about the treatment that is being refused and the circumstances in which the refusal will apply. To be valid, the person must have been competent and understood the decision when they signed the ADRT. Where the patient's advance decision relates to a refusal of potentially life-saving or life prolonging treatment, this must be recorded in writing and witnessed. Any advance refusal is legally binding, providing that the patient is an adult, the patient was competent and properly informed when reaching the prior decision. It is clearly applicable to the present circumstances and there is no reason to believe that the patient has changed their mind. If an advance decision does not meet these criteria but appears to set out a clear indication of the patient's wishes, it will not be legally binding but should be taken into consideration in determining the patient's best interests. An example of an ADRT is the national form and guidance published by NHS Waleson their Advance and Future Care Planning site.[40]

Benefits

Advance care planning for adults with heart failure

The latest evidence indicates that advance care planning (ACP) may help to increase documentation by medical staff regarding discussions with participants, and improve an individual's depression.[41] This involves discussing an individual's future care plan in consideration of the individual's preferences and values. The findings are however, based on low-quality evidence as there is a need for further evidence from large studies to fully explore the effects of ACP for older adults.[41]

Definition, future care planning and mental capacity

Advance care planning was defined by an international white paper as involving individuals with decisional mental capacity at the outset, being able to be fully involved in plans and discussions about their health care.[1] This has led to some countries in the United Kingdom using 'Future Care Planning' [42][43] as an umbrella term, to include both advance care planning for those with capacity, and a planning for those with diminished or absent mental capacity (Best Interests decision making as defined by the UK Mental Capacity Act). Professor Mark Taubert, a palliative care consultant who is lead for Advance & Future Care Planning in Wales, published a position paper on this in 2022,[44] and NHS Scotland has also adopted Future Care Planning as an umbrella term, under which Advance Care Planning or Anticipatory Care planning are only a part-component.

References

  1. ^ a b Rietjens, Judith; et al. (September 2017). "Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care" (PDF). The Lancet. 18 (9): E543–E551.
  2. ^ a b c d "A National Framework for Advance Care Directives" (PDF). Australian Health Ministers' Advisory Council. September 2011. Archived from the original (PDF) on 26 January 2014. Retrieved 17 December 2013.
  3. ^ a b Detering KM, Hancock AD, Reade MC, Silvester W (March 2010). "The impact of advance care planning on end of life care in elderly patients: randomised controlled trial". BMJ. 340. BMJ Publishing Group Ltd: c1345. doi:10.1136/bmj.c1345. PMC 2844949. PMID 20332506.
  4. ^ Cattagni Kleiner A, Santos-Eggimann B, Fustinoni S, Dürst AV, Haunreiter K, Rubli-Truchard E, Seematter-Bagnoud L (April 2019). "Advance care planning dispositions: the relationship between knowledge and perception". BMC Geriatrics. 19 (1): 118. doi:10.1186/s12877-019-1113-3. PMC 6480869. PMID 31014271.
  5. ^ "Respecting Patient Choices". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  6. ^ "Competence and Capacity". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  7. ^ "The benefits of advance care planning". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 16 December 2013.
  8. ^ a b Aslakson RA, Schuster AL, Reardon J, Lynch T, Suarez-Cuervo C, Miller JA, et al. (November 2015). "Promoting perioperative advance care planning: a systematic review of advance care planning decision aids". Journal of Comparative Effectiveness Research. 4 (6): 615–50. doi:10.2217/cer.15.43. PMID 26346494.
  9. ^ Silveira MJ, Kim SY, Langa KM (April 2010). "Advance directives and outcomes of surrogate decision making before death". The New England Journal of Medicine. 362 (13). Massachusetts Medical Society: 1211–8. doi:10.1056/NEJMsa0907901. PMC 2880881. PMID 20357283.
  10. ^ Kim P, Daly JM, Berry-Stoelzle MA, Schmidt ME, Michaels LC, Dorr DA, Levy BT (2020-03-01). "Prognostic Indices for Advance Care Planning in Primary Care: A Scoping Review". Journal of the American Board of Family Medicine. 33 (2): 322–338. doi:10.3122/jabfm.2020.02.190173. PMC 7772823. PMID 32179616.
  11. ^ Winzelberg GS, Hanson LC, Tulsky JA (June 2005). "Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families". Journal of the American Geriatrics Society. 53 (6). American Geriatrics Society: 1046–50. doi:10.1111/j.1532-5415.2005.53317.x. PMID 15935032. S2CID 13297057.
  12. ^ Cartwright CM, Parker MH (October 2004). "Advance care planning and end of life decision making". Australian Family Physician. 33 (10). Royal Australian College of General Practitioners: 815–9. PMID 15532156.
  13. ^ "Your rights and choices as a patient". Dying with Dignity. 2011. Archived from the original on 11 October 2014. Retrieved 9 October 2014.
  14. ^ Mullick A, Martin J, Sallnow L (October 2013). "An introduction to advance care planning in practice". BMJ. 347. BMJ Publishing Group Ltd: f6064. doi:10.1136/bmj.f6064. PMID 24144870. S2CID 29973911.
  15. ^ a b "Choosing someone to speak for you". Advance Care Planning Australia. 19 December 2013. Archived from the original on 2014-01-26.
  16. ^ "Substitute Decision Maker". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  17. ^ "Substitute Decision-Makers: End-of-Life Decision-Making when the Patient is Incapable". Caring to the end of life - Princess Margaret Hospital University Health Network. Archived from the original on 2014-07-26. Retrieved 16 December 2013.
  18. ^ "Enduring Power of Attorney". Public Advocate of the ACT. 20 July 2011. Retrieved 17 December 2013.
  19. ^ "Enduring Guardianship". New South Wales Government, Guardian Tribunal. 7 August 2012. Retrieved 17 December 2013.
  20. ^ "Enduring Power of Attorney". Queensland Government. 22 February 2013. Retrieved 17 December 2013.
  21. ^ "Medical Power of Attorney and Anticipatory Direction". Government of South Australia, SA Health. 12 October 2013. Retrieved 17 December 2013.
  22. ^ "Enduring guardianship". Tasmanian Government, Guardianship and Administration Board. 30 July 2013. Retrieved 17 December 2013.
  23. ^ "Medical Treatment Decision Makers". Office of the Public Advocate Victoria. Retrieved 4 October 2021.
  24. ^ "Enduring Power of Giardianship (EPG)". Government of Western Australia, Office of the Public Advocate. Retrieved 18 December 2013.
  25. ^ "Lasting power of attorney". GOV.UK. 8 November 2013. Retrieved 17 December 2013.
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  27. ^ "Personal directives in Nova Scotia" (PDF). novascotia.ca. Retrieved 9 Oct 2014.
  28. ^ "Wills and estate planning". Public Legal education and information service of New Brunswick. Retrieved 9 Oct 2014.
  29. ^ "Health Care Directives" (PDF). Community legal information association of PEI. Retrieved 9 Oct 2014.
  30. ^ "My mandate in case of incapacity". Curateur Public Quebec. Retrieved 9 Oct 2014.
  31. ^ "Power of Attorney for Personal Care". Community Legal Education Ontario. Retrieved 9 Oct 2014.
  32. ^ "Health Care Directive". gov.mb.ca. Retrieved 9 Oct 2014.
  33. ^ "The Health Care Directives and Substitute Health Care Decision Makers Act". justice.gov.sk.ca. Archived from the original on 2014-10-15. Retrieved 9 Oct 2014.
  34. ^ "Understanding Personal Directives" (PDF). Government of Alberta. Retrieved 9 Oct 2014.
  35. ^ "HEALTH CARE (CONSENT) AND CARE FACILITY (ADMISSION) ACT". BC laws.ca. Retrieved 9 Oct 2014.
  36. ^ "Advance Directives". Yukon Health Guide. Archived from the original on 2013-05-19. Retrieved 9 Oct 2014.
  37. ^ "Personal Directives" (PDF). NWT Health and Social services. Archived from the original (PDF) on 15 October 2014. Retrieved 9 Oct 2014.
  38. ^ "Advance Care Planning". NSW Office for Ageing, NSW Trustee and Guardian and NSW Public Guardian. Archived from the original on 15 December 2013. Retrieved 18 December 2013.
  39. ^ "Writing down your wishes". Advance Care Planning Australia. Archived from the original on 26 January 2014. Retrieved 18 December 2013.
  40. ^ "Advance and Future Care Plans". NHS Wales Executive. 12 January 2022. Retrieved 12 January 2024.
  41. ^ a b Nishikawa Y, Hiroyama N, Fukahori H, Ota E, Mizuno A, Miyashita M, et al. (Cochrane Heart Group) (February 2020). "Advance care planning for adults with heart failure". The Cochrane Database of Systematic Reviews. 2020 (2): CD013022. doi:10.1002/14651858.CD013022.pub2. PMC 7045766. PMID 32104908.
  42. ^ Rietjens, Judith; et al. (18 February 2021). "Advance Care Planning: the future". BMJ Supportive & Palliative Care. 11 (1): 89–91. doi:10.1136/bmjspcare-2020-002304.
  43. ^ "NHS Scotland: Future Care Planning". NHS Inform Scotland. 25 January 2024. Retrieved 11 February 2024.
  44. ^ Taubert, Mark; et al. (1 February 2022). "Advance and Future Care Planning: strategic approaches in Wales". BMJ Supportive & Palliative Care. doi:10.1136/bmjspcare-2021-003498.
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