How do nursing home doctors involve patients and next of kin in end-of-life decisions? A qualitative study from Norway

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Abstract

Background

Ethically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.

Methods

We performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.

Results

The doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.

Conclusions

Many end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed.

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Most cited references 14

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A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information.

Sharon Parker, Josephine M Clayton, Karen Hancock … (2007)

Evidence-based recommendations concerning how to discuss dying, life expectancy, and likely future symptoms with patients with a limited life expectancy and their families are lacking. The aim of this systematic review was to review studies regarding prognostic/end-of-life communication with adult patients in the advanced stages of a life-limiting illness and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases up to November 2004. One hundred twenty-three studies met the criteria for the full review, and 46 articles reported on patient/caregiver preferences for content, style, and timing of information. The majority of the research was descriptive. Although there were individual differences, patients/caregivers in general had high levels of information need at all stages of the disease process regarding the illness itself, likely future symptoms and their management, and life expectancy and information about clinical treatment options. Patient and caregiver information needs showed a tendency to diverge as the illness progressed, with caregivers needing more and patients wanting less information. Patients and caregivers preferred a trusted health professional who showed empathy and honesty, encouraged questions, and clarified each individual's information needs and level of understanding. In general, most patients/caregivers wanted at least some discussion of these topics at the time of diagnosis of an advanced, progressive, life-limiting illness, or shortly after. However, they wanted to negotiate the content and extent of this information.

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The prevalence of psychiatric symptoms and behavioural disturbances and the use of psychotropic drugs in Norwegian nursing homes.

Geir Selbæk, Øyvind Kirkevold, Knut Engedal (2007)

Psychiatric and behavioural symptoms in dementia are associated with a range of negative outcomes, including institutional placement and the widespread use of psychotropic drugs in spite of limited evidence for their efficacy. To determine the prevalence of psychiatric and behavioural symptoms and the pattern of psychotropic drug prescription in patients with various degrees of dementia. A sample of 1,163 non-selected nursing home patients were assessed by means of the Neuropsychiatric Inventory, the Clinical Dementia Rating scale and Lawton's activities of daily living scale. In addition, information was collected from the patients' records. Dementia was found in 81% of the patients and 72% of them had clinically significant psychiatric and behavioural symptoms. The frequencies of symptoms increased with the severity of the dementia. Psychotropic medication was being prescribed to 75% of patients with dementia. There was a significant relationship between the type of drug and the symptom for which it had been dispensed. Psychiatric and behavioural symptoms are frequent in nursing homes and the rate increases with the progression of the dementia. Systematic programmes are needed for disseminating skills and providing guidance regarding the evaluation and treatment of these symptoms in nursing homes.

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End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives

Elisabeth Gjerberg, Lillian Lillemoen, Reidun Førde … (2015)

Background Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients’ and next-of-kin’s experiences with- and perspectives on end-of-life care conversations, information and shared decision-making. Methods The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a “bricolage” approach”. Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Results Few patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients’ opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient’s health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives’ opinions of the patient’s preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions. Conclusion Nursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in opinions and the timing for such conversations. As the popularity of advance care planning increases in many Western countries, discussions of patients’ and relatives’ perspectives will be of great interest to a broader audience.

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Author and article information

Contributors

Maria Romøren: +47 91 37 76 93/ , +47 22 85 05 50 , maria.romoren@medisin.uio.no

Reidar Pedersen: reidar.pedersen@medisin.uio.no

Reidun Førde: reidun.forde@medisin.uio.no

Journal

Journal ID (nlm-ta): BMC Med Ethics

Journal ID (iso-abbrev): BMC Med Ethics

Title: BMC Medical Ethics

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6939

Publication date (Electronic): 14 January 2016

Publication date PMC-release: 14 January 2016

Publication date Collection: 2016

Volume: 17

Electronic Location Identifier: 5

Affiliations

Institute of Health and Society, Faculty of Medicine, University of Oslo, P.O box 1130, Blindern, 0318 Oslo, Norway

Article

Publisher ID: 88

DOI: 10.1186/s12910-016-0088-2

PMC ID: 4714479

PubMed ID: 26769024

SO-VID: c6dd5707-0629-4c29-8ee7-b365a0929683

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 20 April 2015

Date accepted : 12 January 2016

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ScienceOpen disciplines: Medicine

Keywords: nursing home,end-of-life decisions,life prolonging treatment,advance care planning,decision making capacity,patient rights,next of kin,ethics,justice

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ScienceOpen disciplines: Medicine

Keywords: nursing home, end-of-life decisions, life prolonging treatment, advance care planning, decision making capacity, patient rights, next of kin, ethics, justice

How do nursing home doctors involve patients and next of kin in end-of-life decisions? A qualitative study from Norway

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Arab Journal of Forensic Sciences & Forensic Medicine (AJFSFM)

Most cited references 14

A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information.

The prevalence of psychiatric symptoms and behavioural disturbances and the use of psychotropic drugs in Norwegian nursing homes.

End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives

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