Sage Journals: Discover world-class research

Abstract

Background

Patients, caregivers, and healthcare professionals often describe a “good death” as a pain-free process. However, many patients experience pain during their last weeks of life. Advance directives (ADs) are legally binding documents that allow individuals to express their wishes for end-of-life care which should include management of their pain.

Methods

An interprofessional team conducted a comprehensive analysis of ADs from all 50 states and the District of Columbia to assess the inclusion of language that reflects patients’ wishes for pain relief at the end of life.

Results

Thirty-seven (73%) of the 51 entities examined reflected the prototypical directive, containing explicit instructions for withholding or withdrawing interventions that may prolong suffering rather than options for treating pain. Of these, 12 (24%) did not include the word “pain”. Only 14 states (27%) provided clear guidance for managing pain. Unexpectantly, researchers found that 13 (25%) addressed the common fears of patients, caregivers, and healthcare teams when using opioids to relieve suffering, such as addiction, sedation, appetite, or respiratory suppression, and hastening death.

Conclusion

The majority of ADs reviewed lacked clear and comprehensive measures for addressing pain relief. This deficiency may contribute to the undertreatment of pain and amplify the anxiety felt by patients, families, and healthcare providers when making end-of-life decisions. The results highlight the need for improvements in ADs to help ensure that patients' wishes regarding pain management are adequately addressed, documented and respected.

Keywords

advance directives pain relief of pain fear end-of-life opioids

Get full access to this article

View all access options for this article.

References

Field

Cassel

. Approaching Death: Improving Care at the End of Life. The National Academies Press; 1997.

Krikorian

Maldonado

CAV

Pastrana

. Patient’s perspectives on the notion of a good death: A systematic review of the literature. J Pain Symptom Manag. 2020;59(1):152-164. doi:10.1016/j.jpainsymman.2019.07.033

Meier

Gallegos

Thomas

Depp

Irwin

Jeste

. Defining a good death (successful dying): Literature review and a call for research and public dialogue. Am J Geriatr Psychiatr. 2016;24(4):261-271. doi:10.1016/j.jagp.2016.01.135

Sepúlveda

Baid

Johnson

Finkelstein

. What is a good death? A choice experiment on care indicators for patients at end of life. J Pain Symptom Manag. 2021;63(4):457-467. doi:10.1016/j.jpainsymman.2021.11.005

Abbott

Prigerson

Maciejewski

. The influence of patients’ quality of life at the end of life on Bereaved caregivers’ suicidal ideation. J Pain Symptom Manag. 2013;48(3):459-464. doi:10.1016/j.jpainsymman.2013.09.011

Detering

Hancock

Reade

Silvester

. The impact of advance care planning on end-of-life care in elderly patients: Randomized controlled trial. BMJ. 2010;340:c1345-c1345. doi:10.1136/bmj.c1345

Sabatino

. The evolution of health care advance planning law and policy. Milbank Q. 2010;88(2):211-239. doi:10.1111/j.1468-0009.2010.00596.x

Kutner

. Due process of euthanasia: The living will, a proposal. Indiana Law J. 1969;44(4):2. https://www.repository.law.indiana.edu/ilj/vol44/iss4/2. Accessed December 9, 2020.

Silveira

Kim

SYH

Langa

. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211-1218. doi:10.1056/nejmsa0907901

10.

Zwakman

van Delden

Caswell

, et al. Content analysis of advance directives completed by patients with advanced cancer as part of an advance care planning intervention: Insights gained from the action trial. Support Care Cancer. 2019;28(3):1513-1522. doi:10.1007/s00520-019-04956-1

11.

University of Iowa . Declaration Relating to Life-Sustaining Procedures (Living Will) and Durable Power of Attorney for Health Care Decisions (Medical Power of Attorney). University of Iowa Hospitals and Clinics. https://uihc.org/advance-directives. Accessed February 21, 2023.

12.

Nolan

. Could lack of clarity in written advance directives contribute to their ineffectiveness? A study of the content of written advance directives. Appl Nurs Res. 2003;16(1):65-69. doi:10.1053/apnr.2003.50007

13.

Bernhofer

Sorrell

. Nurses managing patients’ pain may experience moral distress. Clin Nurs Res. 2014;24(4):401-414. doi:10.1177/1054773814533124

14.

Eggenberger

Howard

Prescott

Luck

. Exploring quality of life in end-of-life discussions. Am J Hosp Palliat Med. 2019;37(6):465-473. doi:10.1177/1049909119890606

15.

Mercadante

Ferrera

Casuccio

. The use of opioids in the last week of life in an acute palliative care unit. Am J Hospice Palliat Med. 2010;27(8):514-517. doi:10.1177/1049909110366010

16.

Berger

Vadivelu

. Common misconceptions about opioid use for pain management at the end of life. AMA Journal of Ethics. 2013;15(5):403-409. doi:10.1001/virtualmentor.2013.15.5.ecas1-1305

17.

Sathornviriyapong

Nagaviroj

Anothaisintawee

. The association between different opioid doses and the survival of advanced cancer patients receiving palliative care. BMC Palliat Care. 2016;15(1):95. doi:10.1186/s12904-016-0169-5

18.

Bailey

Williams

Goode

, et al. Opioid pain medication orders and administration in the last days of life. J Pain Symptom Manag. 2012;44(5):681-691. doi:10.1016/j.jpainsymman.2011.11.006

19.

Givler

Bhatt

Maani-Fogelman

. The Importance of Cultural Competence in Pain and Palliative Care. StatPearls Treasure Island (FL); 2023. Bookshelf ID: NBK493154. PMID: 29630206. https://www.ncbi.nlm.nih.gov/books/NBK493154/

20.

Fohr

. The double effect of pain medication: separating myth from reality. J Palliat Med. 1998;1(4):315-328. doi:10.1089/jpm.1998.1.315

21.

Pennsylvania durable health care power of Attorney . The hospital health system association of Pennsylvania.https://www.haponline.org/Public-Health/Information-for-Consumers/Advance-Care-Planning. Accessed February 21, 2023.

22.

Health care decisions Act . Uniform law commission. https://www.uniformlaws.org/viewdocument/final-act-78?CommunityKey=63ac0471-5975-49b0-8a36-6a4d790a4edf&tab=librarydocuments. Accessed December 9, 2020.

23.

Zhao

. The nation’s stock of second homes: Eye on housing. Eye on housing | national association of home builders discusses economics and housing policy. https://eyeonhousing.org/2022/05/the-nations-stock-of-second-homes/#:∼:text=According_to_NAHB_estimates%2C_the,the_most_recent_data_available. https://eyeonhousing.org/2022/05/the-nations-stock-of-second-homes/#:∼:text=According_to_NAHB_estimates%2C_the,the_most_recent_data_available. February 20, 2023.Accessed

24.

Advance care planning tools and resources list . Coalition for compassionate care of California. https://www.coalitionccc.org/CCCC/Resources/ACP-Tools-Resource-List.aspx. Accessed February 21, 2023

25.

California advance health care directive form . Attorney general of California. https://oag.ca.gov/system/files/media/ProbateCodeAdvanceHealthCareDirectiveForm-fillable.pdf. Accessed February 20, 2023.

26.

About five wishes . AWD. https://www.fivewishes.org/about-five-wishes/. Accessed February 22, 2023.

27.

Prigerson

Viola

Maciejewski

Falzarano

. Advance care planning (ACP) to promote receipt of value-concordant care: Results vary according to patient priorities. PLoS One. 2023;18(1). doi:10.1371/journal.pone.0280197

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.12 MB