Patients’ Perspectives on Physician Skill in End-of-Life Care: Differences Between Patients With COPD, Cancer, and AIDS

doi:10.1378/chest.122.1.356

Chest

Volume 122, Issue 1, July 2002, Pages 356-362

https://doi.org/10.1378/chest.122.1.356 Get rights and content

Objectives

Patients’ views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care.

Design

Qualitative study using focus groups and content analysis based on grounded theory.

Setting

Outpatients from multiple medical settings in Seattle, WA.

Patients

Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19).

Results

We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians’ ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis.

Conclusions

Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients’ desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.

Section snippets

Study Design

In this qualitative study, we used focus groups to determine the perspectives of terminally ill patients, family members, and health-care professionals concerning physicians’ skills in providing end-of-life care. Focus groups are a qualitative study method that capitalizes on group dynamics to obtain information that may not be available through individual interviews or quantitative methods.¹⁵¹⁶ Results from this study have been previously published describing a conceptual framework of

Results

Table 1shows the number of patients in each disease category and the demographic characteristics of the focus group participants. Table 2shows the proportion of coded passages that fell within each domain for the different types of patients, and the rankings for the frequency with which each domain was identified. As Table 2 demonstrates, there were considerable similarities across disease groups in the frequency with which comments for each domain were identified. For all three disease groups,

Discussion

We previously used focus groups to develop an understanding of the domains and specific components of physicians’ skills in providing quality end-of-life care.¹¹ In the current study, we compared and contrasted the perspectives of patients with COPD, ICU (often on a ventilator), AIDS, and cancer with the goal of providing physicians with insights to improve quality of end-of-life care for these patients. There were remarkable similarities in the overall domains across the three groups.¹¹ For

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Themes of goals of palliative RT centered on either restoration, such as through improving quality of life or minimizing pain, or on a desire to combat cancer by eliminating tumor. While most patients perceived that palliative RT would palliate symptoms but not cure their cancer, some patients believed that the goal of palliative RT was to cure. Themes that emerged surrounding patients’ understanding of prognosis and what lies ahead included uncertainty and apprehension about the future, a focus on additional treatment, and confronting mortality. Most patients preferred to receive information about goals of treatment and prognosis from their doctors, including radiation oncologists, rather than other members of the medical team. Patients also expressed a desire for written patient education materials on palliative RT.
Unclear perceptions of goals of treatment and prognosis may motivate some patients to pursue unnecessarily aggressive cancer treatments. Patients desire prognostic information from their doctors, including radiation oncologists, who are important contributors to goals of care discussions and may improve patient understanding and well-being by using restorative rather than combat-oriented language.
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For both trials, the primary outcome is EHR documentation of a goals-of-care discussion within 30 days of randomization; additional outcomes include intensity of end-of-life care. Trial 2 also examines patient- or family-reported outcomes assessed by surveys targeting 3–5 days and 4–8 weeks after randomization including quality of goals-of-care communication, receipt of goal-concordant care, and psychological symptoms.
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Clinical Trials Registration: STUDY00007031-A and STUDY00007031-B.
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Randy and his foundational work, including both successes as well as the occasional near miss, have enriched and advanced the field as well as (immeasurably) impacted the work of so many others—including this manuscript's authors.
Identifying Core Domains to Assess the “Quality of Death”: A Scoping Review
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Citation Excerpt :
Hope is maintenance of a sense of security amidst uncertainty52,232 and a connection with the future,50,203,233 and linked to preparedness and spirituality,181 which for the health system is linked to access to spiritual care.80 While much of the reviewed literature focused on patient hope,50,225,233,234 hope was also cited as a factor in reducing caregiver vulnerability and protecting them against burnout.95 Subdomain 9, caregiver-centered support to manage caregiver burden, pertains to the extensive informal caregiving burden faced by family members in supporting patients (Panel 3).
There is growing recognition of the value to patients, families, society, and health systems in providing healthcare, including end-of-life care, that is consistent with both patient preferences and clinical guidelines.
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PubMed/MEDLINE (NCBI), PsycINFO (ProQuest), and CINAHL (EBSCO) databases were searched for peer-reviewed journal articles published prior to February 22, 2020. The SPIDER tool was used to determine search terms. A priori criteria were followed with independent review to identify relevant articles.
A total of 309 eligible articles were identified out of 2728 discrete results. The articles represent perspectives from the broader health system (11), patients (70), family and informal caregivers (65), healthcare professionals (43), multiple viewpoints (110), and others (10). The most common condition of focus was cancer (103) and the majority (245) of the studies concentrated on high-income country contexts. The review identified five domains and 11 subdomains focused on structural factors relevant to end-of-life care at the broader health system level, and two domains and 22 subdomains focused on experiential aspects of end-of-life care from the patient and family perspectives. The structural health system domains were: 1) stewardship and governance, 2) resource generation, 3) financing and financial protection, 4) service provision, and 5) access to care. The experiential domains were: 1) quality of care, and 2) quality of communication.
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First, while we did interview a family member to help hone our language, we did not include patients as stakeholders in the design process, which could have added additional depth to our user-centered approach. However, patients were included in the qualitative work prior to initiation of the trial,4,13–18,21–23 as well as other pilot work. Second, we did not conduct any observations of end-users in their environment using the revised guides, which also could have been useful.11
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To describe how human-centered design can be applied to the development and refinement of clinician- and patient-facing inpatient goals-of-care discussion guides (Jumpstart guides).
Human-centered design was applied to the development and refinement of the inpatient Jumpstart guides in four phases: (1) discovering problems based on prior pilots, studies, and research team priorities; (2) further defining problems based on stakeholder and expert review of the current guides; (3) designing solutions based on consensus among stakeholders; and (4) validating solutions after research team review of stakeholder comments.
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View all citing articles on Scopus

: Support was provided by the Open Society Institute Project on Death in America.

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Chest

Ethics in Cardiopulmonary MedicinePatients’ Perspectives on Physician Skill in End-of-Life Care: Differences Between Patients With COPD, Cancer, and AIDS

Objectives

Design

Setting

Patients

Results

Conclusions

Section snippets

Study Design

Results

Discussion

Lancet

J Pain Symptom Manage

Approaching death: improving care at the end of life; Institute of Medicine Report

Good care of the dying patient

JAMA

A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT)

JAMA

Effects of offering advance directives on medical treatment and costs

Ann Intern Med

A prospective study of advance directives for life-sustaining care

N Engl J Med

Decisions about resuscitation: inequities among patients with different diseases but similar prognoses

Ann Intern Med

The last six months of life for patients with congestive heart failure

J Am Geriatr Soc

Dying with acute respiratory failure or multiple organ system failure with sepsis

J Am Geriatr Soc

Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT

J Am Geriatr Soc

How do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer

Thorax

Understanding physicians' skills at providing end-of-life care: perspectives of patients, families, and health care workers

J Gen Intern Med

Centers for Disease Control and Prevention update: trends in AIDS incidence, deaths, and prevalence—United States, 1996

MMWR Morb Mortal Wkly Rep

Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research

BMJ

Introducing focus groups

BMJ

Ethics in Cardiopulmonary Medicine
Patients’ Perspectives on Physician Skill in End-of-Life Care: Differences Between Patients With COPD, Cancer, and AIDS