Letter to the Editor: Respecting Patient Autonomy,End-of-Life Care Experience,and the Transitional Status

Abstract

Dear Editor:

Clinical ethics emphasize the importance of patients' autonomy.¹ Today, the need for a patient's involvement in decision making in daily clinical practice is unquestionable. However, patients' autonomy in end-of-life care often involves various ethical concerns, including their deteriorating decision-making capacity. With evolving end-of-life ethical debate, it has become easier to implement ethical practices such as identifying surrogate decision makers and recommending advance care planning.

Patients at end of life have two options: living and dying. “Status Passage,” one of Glaser and Strauss' best publications, states that patients nearing the end of their life are in a “transitional state.”² In modern society, the state of being in an ambiguous existence, such as transitional status, is commonly lumped into certain categories so it becomes easy for people to deal with such categories. For example, when a person is accused, people may regard the person as a sinner despite that the ruling has not been confirmed. When a patient is at end of life, health care professionals may treat the patient as dying despite living. Dying is a transitional process that fluctuates between living and death. Without careful attention, even health care professionals can fail to respect patient autonomy.

Physician cumulative experience in end-of-life care can be negatively correlated with respecting patient autonomy. We conducted a secondary analysis with physicians' end-of-life care experience nationwide survey.³ In contrast to other variables, we found a clear trend toward family-first decision-making style as physicians' end-of-life experience increased (e.g., assignment of end-of-life patients, patient death, and death pronouncements experience) (Table 1).

Table 1.

Factors Related to Decision-Making Style Regarding Patients in End of Life

Variables	Reference	Should tell the patient first, then family^a				Should tell the family first, then patient^a				Should tell the patient, even if the family disagrees^a
Variables	Reference	OR	95% CI		p	OR	95% CI		p	OR	95% CI		p
Seniority
Resident physician (PGY1–2)	Ref.	1				1				1
Clinical fellow (PGY3–5)		0.326	0.203	0.525	<0.001	0.882	0.462	1.685	0.704	0.713	0.446	1.14	0.157
Attendant		0.922	0.566	1.502	0.745	0.196	0.058	0.662	0.009	1.418	0.865	2.324	0.166
Age		1.007	0.99	1.024	0.427	0.941	0.898	0.985	0.01	1.022	1.005	1.04	0.012
Gender
Male	Ref.	1				1				1
Female		0.721	0.46	1.129	0.153	0.566	0.256	1.25	0.159	1.136	0.725	1.782	0.578
Years of clinical experience		1.007	0.989	1.024	0.445	0.934	0.886	0.985	0.012	1.02	1.002	1.038	0.03
Marital status
Married	Ref.	1				1				1
Unmarried		0.959	0.648	1.419	0.835	1.67	0.867	3.215	0.125	0.743	0.497	1.109	0.146
Own family long-term care experience
Yes	Ref.	1				1				1
No		1.173	0.71	1.938	0.532	1.323	0.57	3.071	0.515	0.647	0.393	1.067	0.088
Own family bereavement experience
Yes	Ref.	1	0	0	0	1	0	0	0	1	0	0	0
No		0.747	0.45	1.239	0.258	0.382	0.133	1.098	0.074	0.846	0.503	1.422	0.527
Religion
Yes	Ref.	1				1				1
No		1.003	0.646	1.558	0.988	0.757	0.364	1.577	0.457	1.451	0.93	2.263	0.101
Interest in palliative care
High	Ref.	1				1				1
Low		1.898	0.967	3.727	0.063	1.545	0.61	3.911	0.359	0.675	0.325	1.402	0.292
Clinical training in palliative care
Yes	Ref.	1				1				1
No		0.858	0.577	1.274	0.447	0.664	0.363	1.217	0.185	0.669	0.447	1.003	0.051
Number of end-of-life patients assigned	<10 as reference	0.672	0.499	0.906	0.009	1.53	0.961	2.434	0.073	0.768	0.567	1.041	0.088
Number of patient deaths experienced	<10 as reference	0.699	0.524	0.932	0.015	1.581	1.005	2.489	0.048	0.759	0.566	1.019	0.066
Number of death pronouncements	<10 as reference	0.683	0.506	0.922	0.013	2.212	1.366	3.585	0.001	0.799	0.589	1.083	0.148

Physicians (198 resident physicians, 134 clinical fellows, and 96 attendant physicians) were asked about their opinions regarding decision-making pattern for end-of-life patients, using a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). The situations were (1) the doctor should tell the patient first and let the patient decide whether his or her family should be told; (2) the doctor should tell the patient's family first and then let them decide whether the patient should be told; and (3) assuming that the family has been told and they do not want the patient to be told, the doctor should tell the patient anyway.

CI, confidence interval; OR, odds ratio; PGY, postgraduate year.

Through daily practice, the importance of family involvement in end-of-life care can be more evident. However, as D. Sudnow argued in “The Social Organization of Dying,” experienced health care professionals may exclude dying patients in decision making without sufficient consideration.⁴ As a result of these data, health care professionals are warranted to be reflective about respecting autonomy for people in the “transitional status.”

Footnotes

Acknowledgments

We express our special gratitude to all those who kindly responded to our survey.

Authors' Contributions

Y.U., S.O., and N.K. contributed to conceptualization, methodology, funding acquisition, investigation, and project administration. Y.U., Y.W., and N.K. were involved in data curation, formal analysis, writing–original draft, review, and editing. M.M. and T.M. was in charge of supervision, writing–review, and editing. All authors have reviewed the article and agreed to submit and publish it.

Funding Information

This study was supported by the Sasakawa Health Foundation (ID: 2019A-105) and the Ministry of Health, Labour, and Welfare in Japan (Health Labor Science Research Grant: Grant No. 20EA1009). The funder had no role in the conception or design of the study, the acquisition, analysis, interpretation of data, or in drafting the article.

References

Riches

, Voigt

. Palliative, ethics, and end-of-life care issues in the cancer patient. Crit Care Clin, 2021; 37(1):105–115; doi: 10.1016/j.ccc.2020.08.005

Barney

, Strauss

. Status Passage. Routledge: New York, NY, USA; 2017.

Okamoto

, Uneno

, Kawashima

, et al. Difficulties facing junior physicians and solutions toward delivering end-of-life care for patients with cancer: A nationwide survey in Japan. Palliat Med Rep, 2022; 3(1):255–263; doi: 10.1089/pmr.2022.0008

Sudnow

Passing On: The Social Organization of Dying. Prentice-Hall: Upper Saddle River, NJ, USA; 1967.