Honoring Patient Care Preferences: Surrogates Speak

2012 ◽  
Vol 65 (4) ◽  
pp. 257-280 ◽  
Author(s):  
Julia W. Buckey ◽  
Olga Molina
Keyword(s):  
Decision Making ◽  
Treatment Decision ◽  
Living Will ◽  
Emotional Impact ◽  
Healthcare Team ◽  
Life Sustaining Treatment ◽  
Stressful Experience ◽  
Surrogate Decision ◽  
Interdisciplinary Healthcare ◽  
Interdisciplinary Healthcare Team

A growing body of evidence has pointed to the stressful experience surrounding surrogate decision-making on behalf of incapacitated patients. This study (N = 59) asked surrogates to speak about their experiences immediately after having made a life-sustaining treatment decision. Grounded theory analysis revealed four themes: (1) the emotional impact of the decision-making process on the surrogate; (2) the difficulty of watching a loved one's health deteriorate; (3) the importance of having a Living Will (LW) or other written/verbal instructions; and (4) the reliance on spirituality as a means of coping with the surrogate experience. Findings of this study suggest that engaging surrogates at the time of patient admission may be essential in order to clarify patient preferences and strengthen communication between surrogates and the interdisciplinary healthcare team.

In My Best Interest

2016 ◽  
Vol 34 (2) ◽  
pp. 160-165 ◽  
Author(s):  
Patricia A. Mayer ◽  
Bryn Esplin ◽  
Christopher J. Burant ◽  
Brigid M. Wilson ◽  
MaryAnn Lamont Krall ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Medical Center ◽  
Specific Treatment ◽  
Living Will ◽  
Treatment Preferences ◽  
Power Of Attorney ◽  
Best Interest ◽  
Permanent Disability ◽  
Surrogate Decision

Background: Advance directives (ADs) have traditionally been viewed as clear instructions for implementing patient wishes at times of compromised decision-making capacity (DMC). However, whether individuals prefer ADs to be strictly followed or to serve as general guidelines has not been studied. The Veterans Administration’s Advance Directive Durable Power of Attorney for Health Care and Living Will (VA AD) provides patients the opportunity to indicate specific treatment preferences and to indicate how strictly the directive is to be followed. Objective: To describe preferences for life-sustaining treatments (LSTs) in various illness conditions as well as instructions for the use of VA ADs. Design/Setting: A descriptive study was performed collecting data from all ADs entered into the medical record at 1 VA Medical Center between January and June 2014. Measurements: Responses to VA AD with emphasis on health care agents (HCAs) and LW responses. Results: Veterans were more likely to reject LST when death was imminent (74.6%), when in a coma (71.1%), if they had brain damage (70.6%), or were ventilator dependent (70.4%). A majority (67.4%) of veterans preferred the document to be followed generally rather than strictly. Veterans were more likely to want VA ADs to serve as a general guide when a spouse was named HCA. Conclusion: Most of the sampled veterans rejected LST except under conditions of permanent disability. A majority intend VA ADs to serve as general guidelines rather than strict, binding instructions. These findings have significant implications for surrogate decision making and the use of ADs more generally.

Health care team and treatment decision-making experiences among prostate cancer patients.

2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 57-57
Author(s):  
Nicole E. Nicksic ◽  
Melissa F. Miller ◽  
Kelly Clark ◽  
Alexandra Katherine Zaleta
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Treatment Options ◽  
Treatment Decision ◽  
Current Treatment ◽  
Healthcare Team ◽  
Provider Type ◽  
Treatment Decision Making ◽  
Cancer Support ◽  
Treatment Type

57 Background: Treatment by a multidisciplinary healthcare team can improve patient outcomes, but not all prostate cancer (PC) patients may access multiple providers. This study explored whether differences in healthcare team at treatment were associated with PC treatment type and decision-making. Methods: Of 311 PC patients enrolled in the Cancer Support Community’s Cancer Experience Registry online, 160 (32% ever metastatic, 28% had recurrence, median 3 years since diagnosis) indicated which specialists comprised their healthcare team during treatment (urologist versus a specialist team including 2-5 doctors, 70% of which included urologists). We examined PC treatment decision-making using chi-square tests, independent sample t-tests, and linear regression. Results: The majority were not experiencing symptoms of PC at diagnosis (69%); 58% were diagnosed after a routine check-up. More PC patients with advanced disease at diagnosis had a team of specialists, whereas those diagnosed at stages 1 or 2 typically only saw a urologist ( p<0.01). Most first received care at a private urology practice (44%) compared to 27% for current treatment. Treatment discussions varied by treatment for urologist-only (28%) versus a team of specialists (72%): chemotherapy (16% vs 36%, p=.01), surgery (89% vs 65%, p<.01), radiation (82% vs 80%, p=.75), hormones (36% vs 75%, p<.001), and active surveillance (51% vs 23%, p<.001). More patients who had seen only a urologist had surgery (95% vs 43%, p<.001); those seeing a specialty team tended to undergo other treatments, such as chemotherapy (4% vs 30%, p=.001), radiation (12% vs 83%, p<.001), and hormones (27% vs 77%, p<.001). After controlling for stage at diagnosis, those treated only by a urologist had lower treatment regret ( β=0.22, p<.01). Conclusions: Advanced PC patients more often treated by a specialist team and discuss different treatment options vs. those followed by a urologist only. While effects were small, care provider type was associated with treatment regret and confidence. Healthcare teams could improve the patient experience by increasing communication surrounding navigating myriad treatment options. Clinical trial information: NCT02333604.

Right to Die

2019 ◽  
pp. 71-74
Author(s):  
Elizabeth Ford
Keyword(s):  
Decision Making ◽  
Supreme Court ◽  
Assisted Suicide ◽  
Right To Die ◽  
Surrogate Decision Making ◽  
Physician Assisted Suicide ◽  
Life Sustaining Treatment ◽  
Surrogate Decision ◽  
The U.S ◽  
Right To Refuse

Chapter 7 describes three cases that involve an individual’s right, in certain circumstances, to choose death. Cruzan v. Missouri is more specifically about a right to refuse life-sustaining treatment and surrogate decision-making; Washington v. Glucksberg and Vacco v. Quill are physician-assisted suicide cases, both decided on the same day by the U.S. Supreme Court and both declaring the practice unconstitutional.

scholarly journals Forgoing life-sustaining treatment – a comparative analysis of regulations in Japan, Korea, Taiwan, and England

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Miho Tanaka ◽  
Satoshi Kodama ◽  
Ilhak Lee ◽  
Richard Huxtable ◽  
Yicheng Chung
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Asian Countries ◽  
Regulatory Frameworks ◽  
Life Sustaining Treatment ◽  
Surrogate Decision Makers ◽  
Incapacitated Patients ◽  
Surrogate Decision ◽  
Definition Of ◽  
End Of Life Decision

Abstract Background Regulations on forgoing life-sustaining treatment (LST) have developed in Asian countries including Japan, Korea and Taiwan. However, other countries are relatively unaware of these due to the language barrier. This article aims to describe and compare the relevant regulatory frameworks, using the (more familiar) situation in England as a point of reference. We undertook literature reviews to ascertain the legal and regulatory positions on forgoing LST in Japan, Korea, Taiwan, and England. Main text Findings from a literature review are first presented to describe the development of the regulatory frameworks surrounding the option of forgoing LST in each country. Based on the findings from the four countries, we suggest five ethically important points, reflection on which should help to inform the further development of regulatory frameworks concerning end-of-life care in these countries and beyond. There should be reflection on: (1) the definition of – and reasons for defining – the ‘terminal stage’ and associated criteria for making such judgements; Korea and Taiwan limit forgoing LST to patients in this stage, but there are risks associated with defining this too narrowly or broadly; (2) foregoing LST for patients who are not in this stage, as is allowed in Japan and England, because here too there are areas of controversy, including (in England) whether the law in this area does enough to respect the autonomy of (now) incapacitated patients; (3) whether ‘foregoing’ LST should encompass withholding and withdrawing treatment; this is also an ethically disputed area, particularly in the Asian countries we examine; (4) the family’s role in end-of-life decision-making, particularly as, compared with England, the three Asian countries traditionally place a greater emphasis on families and communities than on individuals; and (5) decision-making with and for those incapacitated patients who lack families, surrogate decision-makers or ADs. Conclusion Comparison of, and reflection on, the different legal positions that obtain in Japan, Korea, Taiwan, and England should prove informative and we particularly invite reflection on five areas, in the hope the ensuing discussions will help to establish better end-of-life regulatory frameworks in these countries and elsewhere.

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