Advance health care directive

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A living will, also called will to live, is one type of advance health directive, or advance health care directive. It is often accompanied by a specific type of power of attorney or health care proxy. These are legal instruments that are usually witnessed or notarized.

  • A living will usually covers specific directives as to the course of treatment that is to be taken by caregivers, or, in particular, in some cases forbidding treatment and sometimes also food and water, should the principal be unable to give informed consent ("individual health care instruction") due to incapacity.
  • A power of attorney for health care appoints an individual (a proxy) to direct health care decisions should the principal be unable to do so.
Refusal of treatment form

As the name suggests, the term "will to live", as opposed to the other terms, tends to emphasize the wish to live as long as possible rather than refusing treatment in the case of serious conditions.

Advance health care directive in specific countries

Australia

In Australia, when patients 80 years of age or older are hospitalized and presented options in a structured session by a trained non-medical facilitators, patients chose:[1] .

  • Cardiopulmonary resuscitation
    • 56% chose no
    • 30% chose yes if the doctor anticipated a good outcome
    • 14% deferred to doctor or surrogate
  • Life prolonging treatment:
    • 41% chose no
    • 39% chose yes if the doctor anticipated a good outcome
    • 20% deferred to doctor or surrogate

Netherlands

In the Netherlands, patients and potential patients can specify the circumstances under which they would want euthanasia for themselves. They do this by providing a written euthanasia directive. This helps establish the previously expressed wish of the patient even if the patient is no longer able to communicate. However, it is only one of the factors that is taken into account. Apart from the will in writing of the patients, at least two physicians, the second being totally unrelated to the first physician in a professional matter (e.g. working in another hospital, no prior knowledge of the medical case at hand), have to agree that the patient is terminally ill and that no hope for recovery exists.

Switzerland

In Switzerland, there are several organizations which take care of registering patient decrees, forms which are signed by the patients declaring that in case of permanent loss of judgment (e.g., inability to communicate or severe brain damage) all means of prolonging life shall be stopped. Family members and these organizations also keep proxies which entitle its holder to enforce such patient decrees. Establishing such decrees is relatively uncomplicated.

United States

In the United States:

  • When individuals implement advanced care planning in their last two years of life, most individuals preferenced comfort care (96%) while 2% requested 'all care possible'. Advanced care planning increased terminal care matching the preferences of the individual[2].
  • Only 17% of claims for patients 65 years of age or older submitted to Centers for Medicare & Medicaid Services indicated advanced care planning.[3]
  • Most states recognize living wills or the designation of a health care proxy.[4] However, a "report card" issued by the Robert Wood Johnson Foundation in 2002 concluded that only seven states deserved an "A" for meeting the standards of the model Uniform Rights of the Terminally Ill Act.[5] Surveys show that one-third of Americans say they've had to make decisions about end-of-life care for a loved one.[6]

Barriers to advance care planning

Physicians may underestimate the receptivity of patients to advance care planning and end of life discussions.[7]

Benefit of advance care planning

In a randomized controlled trial the use of advance directives, including living will and power of attorney for health care, improved correlation between end of life choice and action.[1] In a randomized controlled trial, of the patients randomised to the intervention group which encouraged advance care planning, 81% received advance care planning[1]. Among the patients who died:

  • Terminal care matching their wished occurred among:
    • 86% of those in the intervention group
    • 30% of those in the control group
  • Significantly more satisfaction while less stress, anxiety, and depression occurred among family members in the intervention group.

Two cohort studies using Medicare’s Health and Retirement Study (HRS) found:

  • Most individuals preferenced comfort care (96%) while 2% requested call care possible. Advanced care planning increased terminal care matching the preferences of the individual[2].
  • Individuals with advanced care planning were likely to be enrolled in Hospice (adjusted relative risk = 1.68, 95% CI = 1.43-1.97) and to use Hospice for more than 3 days[8].

Surrogates who report knowing their loved once wishes seem to have less stress than those who made decisions without certainty of the preferences of their loves ones. This is according to a systematic review of observational studies that stated "knowing which treatment is consistent with the patient's preferences was frequently cited as reducing the negative effect on surrogates."[9].

Another cohort study demonstrated that reported depression and anxiety was lessened in families where end of life was discussed with families prior to end of life.[10]

The benefit of palliative care conversations with family members of patients in the intensive care is unclear according to conflict randomized controlled trials.[11][12]

Methods to promote advance care planning

Advance care planning can increased by using:

  • 'Facilitated advance care planning' applied to hospitalized patients.[1]
  • In person guidance for homeless individuals by a social workers from Hospice who used the SELPH AD.[13]

Decision aids have been created to guide decisions. A systematic review of decision aids, noted "most are proprietary or not publicly available."[14] A list of available decision aids is available at https://decisionaid.ohri.ca/AZlist.html .

Honoring Choices Minnesota has been implemented by a collaboration of hospitals.[15]

The physician's perspective

A qualitative survey of internal medicine doctors in the United States found three sources of satisfaction from medical practice:

  1. realizing a fundamental change in perspective via an experience with a patient
  2. making a difference made in someone's life
  3. connecting with patients

The authors of the survey noted how often the meaningful events, such as connecting with patients, occurred at events, such as death, that normally suggest a failure of medical care.[16] The following research suggests factors associated with a meaningful death.

A qualitative study using focus groups that consisted of "physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members". The groups identified the following themes associated with a 'good death'.[17] The article is freely available and provides much more detail.

  1. Pain and Symptom Management. Patients want reassurance that symptoms, such as pain or shortness of breath that may occur at death, will be well treated.
  2. Clear Decision Making. According to the study, 'participants stated that fear of pain and inadequate symptom management could be reduced through communication and clear decision making with physicians. Patients felt empowered by participating in treatment decisions'.
  3. Preparation for Death. Patients wanted to know what to expect near death and to be able to plan for the events that would follow death.
  4. Completion. 'Completion includes not only faith issues but also life review, resolving conflicts, spending time with family and friends, and saying good-bye.'
  5. Contributing to Others. A family member noted, "I guess it was really poignant for me when a nurse or new resident came into his room, and the first thing he'd say would be, ‘Take care of your wife’ or ‘Take care of your husband. Spend time with your children.’ He wanted to make sure he imparted that there's a purpose for life."
  6. Affirmation of the Whole Person. 'They didn't come in and say, "I'm Doctor so and so." There wasn't any kind of separation or aloofness. They would sit right on his bed, hold his hand, talk about their families, his family, golf, and sports.'
  7. Distinctions in Perspectives of a Good Death

A separate study suggests that the patients' preferences will not be stable as death approaches and so the physician should consider re-evaluating these issues.[18]

End of life discussions

An observational study suggests that end-of-life discussions are an important component of the physician-patient relationship and are associated with better quality of life both for the patients and the patient's family after the patient's death.[19] Patients with 'high level of positive religious coping' may be more interested in prolonging life.[20]

A randomized controlled trial of communication between health care providers and family members at the time of death reported that the intervention decreased the burden of bereavement.[12] The intervention consisted of a brochure and family conference that focused on the following items that are remembered with the mnemonic value:

  • to Value and appreciate what the family members said
  • to Acknowledge the family members' emotions
  • to Listen
  • to ask questions that would allow the caregiver to Understand who the patient was as a person
  • to Elicit questions from the family members. Each investigator received a detailed description of the conference procedure

Although not mentioned in this study, other studies suggest most patients[21][22][23], patients would welcome discussion of spiritual or religious beliefs. This could be asked simply by:[24]

  • "Are you at peace"?

In an essay, 'On Saying Goodbye: Acknowledging the End of the Patient–Physician Relationship with Patients Who Are Near Death' suggestions are made to health care providers for saying good-bye to patients near death.[25] The quotes below are from the article. The article is freely available and provides much more detail.

  1. Choose an Appropriate Time and Place
  2. Acknowledge the End of Your Routine Contact and the Uncertainty about Future Contact The doctor could say, "You know, I'm not sure if we will see each other again in person, so while we are with each other now I want to say something about our relationship."
  3. Invite the Patient To Respond, and Use That Response as a Piece of Data about the Patient's State of Mind The authors suggest saying "Would that be okay?" or "how would you feel about that?"
  4. Frame the Goodbye as an Appreciation The authors suggest examples such as "I just wanted to say how much I've enjoyed you and how much I've appreciated your flexibility [or cooperation, good spirits, courage, honesty, directness, collaboration] and your good humor [or your insights, thoughtfulness, love for your family]."
  5. Give Space for the Patient to Reciprocate, and Respond Empathically to the Patient's Emotion If the patients becomes tearful, the doctor can provide silence to allow the patient to respond, or the doctor may ask about what the patient is feeling.
  6. Articulate an Ongoing Commitment to the Patient's Care Do not make the patient feel abandoned, "Of course you know I remain available to you and that you can still call me".
  7. Later, Reflect on Your Work with This Patient

Patients' wishes for end-of-life care may change over time.[26] For example, during hospitalization, patients may preference quality of life, but after discharge patients may preference survival over quality.[27]

Decision making can be assessed with the Aid to Capacity Evaluation (ACE).[28]

In a study in the United States, families and surrogates of critically ill patients did not want grave prognostic information withheld.[29]

Sedation at the end of life

Other difficult issues for physicians include providing sedation for a patient at death and discontinuing life support. Case reports detail these experiences from the physician's perspective.[30][31]

Withdrawing of life support

The experience for surviving family members may be better if life support is withdrawn, that its components be withdrawn sequentially rather than all at once. In addition, extubation of intubated patients before death is associated with more satisfaction.[32]

See also

References

  1. ↑ 1.0 1.1 1.2 1.3 Detering KM, Hancock AD, Reade MC, Silvester W (2010). "The impact of advance care planning on end of life care in elderly patients: randomised controlled trial". BMJ. 340: c1345. doi:10.1136/bmj.c1345. PMC 2844949. PMID 20332506.
  2. ↑ 2.0 2.1 Silveira MJ, Kim SY, Langa KM (2010). "Advance directives and outcomes of surrogate decision making before death". N Engl J Med. 362 (13): 1211–8. doi:10.1056/NEJMsa0907901. PMC 2880881. PMID 20357283.
  3. ↑ National Quality Forum. NQF #0326 Advance Care Plan
  4. ↑ publicagenga.org
  5. ↑ rwjf.org
  6. ↑ publicagenda.org
  7. ↑ Pfeifer MP, Sidorov JE, Smith AC, Boero JF, Evans AT, Settle MB (1994). "The discussion of end-of-life medical care by primary care patients and physicians: a multicenter study using structured qualitative interviews. The EOL Study Group". J Gen Intern Med. 9 (2): 82–8. PMID 8164082.
  8. ↑ Bischoff KE, Sudore R, Miao Y, Boscardin WJ, Smith AK (2013). "Advance care planning and the quality of end-of-life care in older adults". J Am Geriatr Soc. 61 (2): 209–14. doi:10.1111/jgs.12105. PMC 3760679. PMID 23350921.
  9. ↑ Wendler D, Rid A (2011). "Systematic review: the effect on surrogates of making treatment decisions for others". Ann Intern Med. 154 (5): 336–46. doi:10.7326/0003-4819-154-5-201103010-00008. PMID 21357911.
  10. ↑ Garrido MM, Prigerson HG (2014). "The end-of-life experience: modifiable predictors of caregivers' bereavement adjustment". Cancer. 120 (6): 918–25. doi:10.1002/cncr.28495. PMC 3947659. PMID 24301644.
  11. ↑ Carson SS, Cox CE, Wallenstein S, Hanson LC, Danis M, Tulsky JA; et al. (2016). "Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial". JAMA. 316 (1): 51–62. doi:10.1001/jama.2016.8474. PMID 27380343.
  12. ↑ 12.0 12.1 Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C; et al. (2007). "A communication strategy and brochure for relatives of patients dying in the ICU". N Engl J Med. 356 (5): 469–78. doi:10.1056/NEJMoa063446. PMID 17267907. Review in: Evid Based Nurs. 2007 Jul;10(3):85 Review in: ACP J Club. 2007 May-Jun;146(3):69
  13. ↑ Song J, Ratner ER, Wall MM, Bartels DM, Ulvestad N, Petroskas D; et al. (2010). "Effect of an End-of-Life Planning Intervention on the completion of advance directives in homeless persons: a randomized trial". Ann Intern Med. 153 (2): 76–84. doi:10.7326/0003-4819-153-2-201007200-00003. PMID 20643989.
  14. ↑ Butler M, Ratner E, McCreedy E, Shippee N, Kane RL (2014). "Decision aids for advance care planning: an overview of the state of the science". Ann Intern Med. 161 (6): 408–18. doi:10.7326/M14-0644. PMID 25069709.
  15. ↑ Wilson KS, Kottke TE, Schettle S (2014). "Honoring Choices Minnesota: preliminary data from a community-wide advance care planning model". J Am Geriatr Soc. 62 (12): 2420–5. doi:10.1111/jgs.13136. PMC 4293157. PMID 25516036.
  16. ↑ Horowitz C, Suchman A, Branch W, Frankel R (2003). "What do doctors find meaningful about their work?". Ann Intern Med. 138 (9): 772–5. PMID 12729445.
  17. ↑ Steinhauser K, Clipp E, McNeilly M, Christakis N, McIntyre L, Tulsky J (2000). "In search of a good death: observations of patients, families, and providers". Ann Intern Med. 132 (10): 825–32. PMID 10819707.
  18. ↑ Fried TR, O'leary J, Van Ness P, Fraenkel L (2007). "Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment". Journal of the American Geriatrics Society. 55 (7): 1007–14. doi:10.1111/j.1532-5415.2007.01232.x. PMID 17608872.
  19. ↑ Wright, Alexi A. (2008-10-08). "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment". JAMA. 300 (14): 1665–1673. doi:10.1001/jama.300.14.1665. Retrieved 2008-10-08. Unknown parameter |coauthors= ignored (help)
  20. ↑ Phelps AC, Maciejewski PK, Nilsson M; et al. (2009). "Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer". JAMA. 301 (11): 1140–7. doi:10.1001/jama.2009.341. PMID 19293414. Unknown parameter |month= ignored (help)
  21. ↑ Ehman JW, Ott BB, Short TH, Ciampa RC, Hansen-Flaschen J (1999). "Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill?". Arch. Intern. Med. 159 (15): 1803–6. PMID 10448785.
  22. ↑ MacLean CD, Susi B, Phifer N; et al. (2003). "Patient preference for physician discussion and practice of spirituality". J Gen Intern Med. 18 (1): 38–43. PMC 1494799. PMID 12534762. Unknown parameter |month= ignored (help)
  23. ↑ Post SG, Puchalski CM, Larson DB (2000). "Physicians and patient spirituality: professional boundaries, competency, and ethics". Ann. Intern. Med. 132 (7): 578–83. PMID 10744595. Unknown parameter |month= ignored (help)
  24. ↑ Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA (2006). ""Are you at peace?": one item to probe spiritual concerns at the end of life". Arch. Intern. Med. 166 (1): 101–5. doi:10.1001/archinte.166.1.101. PMID 16401817. Unknown parameter |month= ignored (help)
  25. ↑ Back A, Arnold R, Tulsky J, Baile W, Fryer-Edwards K (2005). "On saying goodbye: acknowledging the end of the patient-physician relationship with patients who are near death". Ann Intern Med. 142 (8): 682–5. PMID 15838086.
  26. ↑ Wittink MN, Morales KH, Meoni LA; et al. (2008). "Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study". Arch. Intern. Med. 168 (19): 2125–30. doi:10.1001/archinte.168.19.2125. PMID 18955642. Unknown parameter |month= ignored (help)
  27. ↑ Stevenson LW, Hellkamp AS, Leier CV; et al. (2008). "Changing preferences for survival after hospitalization with advanced heart failure". J. Am. Coll. Cardiol. 52 (21): 1702–8. doi:10.1016/j.jacc.2008.08.028. PMID 19007689. Unknown parameter |month= ignored (help)
  28. ↑ Sessums LL, Zembrzuska H, Jackson JL (2011). "Does this patient have medical decision-making capacity?". JAMA. 306 (4): 420–7. doi:10.1001/jama.2011.1023. PMID 21791691.
  29. ↑ Apatira L, Boyd EA, Malvar G; et al. (2008). "Hope, truth, and preparing for death: perspectives of surrogate decision makers". Ann. Intern. Med. 149 (12): 861–8. PMID 19075205. Unknown parameter |month= ignored (help)
  30. ↑ Edwards M, Tolle S (1992). "Disconnecting a ventilator at the request of a patient who knows he will then die: the doctor's anguish". Ann Intern Med. 117 (3): 254–6. PMID 1616221.
  31. ↑ Petty T (2000). "Technology transfer and continuity of care by a "consultant"". Ann Intern Med. 132 (7): 587–8. PMID 10744597.
  32. ↑ Gerstel E, Engelberg RA, Koepsell T, Curtis JR (2008). "Duration of withdrawal of life support in the intensive care unit and association with family satisfaction". Am. J. Respir. Crit. Care Med. 178 (8): 798–804. doi:10.1164/rccm.200711-1617OC. PMID 18703787. Unknown parameter |month= ignored (help)

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