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Dynamic Preferences for Site of Death Among Patients With Advanced Chronic Obstructive Pulmonary Disease, Chronic Heart Failure, or Chronic Renal Failure
Address correspondence to: Daisy J.A. Janssen, MD, PhD, Program Development Centre, Centre of Expertise for Chronic Organ Failure (CIRO+), Hornerheide 1, 6085 NM Horn, The Netherlands.
Departments of General Practice and Health Services Research, Faculty of Health Medicine and Life Sciences/CAPHRI, Maastricht University, Maastricht, The Netherlands
Program Development Centre, Centre of Expertise for Chronic Organ Failure (CIRO+), Horn, The NetherlandsDepartment of Respiratory Medicine, Maastricht University Medical Centre+, Maastricht, The Netherlands
To die at the preferred site is a key principle of a good death.
Objectives
To examine one-year stability of preferences for site of death among patients with advanced chronic organ failure, and to assess agreement between the actual site of death and the site patients indicated in advance as their preferred site.
Methods
Clinically stable outpatients (n=265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess their preferred site of death. One-year follow-up was completed by 77.7% of the patients. A bereavement interview was done with the closest relative of patients who died within two years after baseline (n=66, 24.9%) to assess their actual site of death.
Results
During one-year follow-up, 61.2% of the patients changed their preference for site of death. During the home interview before their death, 51.5% reported to prefer to die at home. A considerable portion of the patients (57.6%) died in the hospital, and 39.4% of the patients died at the site they reported previously as their preferred site (κ=0.07, P=0.42).
Conclusion
Preferences for site of death may change in patients with advanced chronic organ failure. Future studies should explore whether and to what extent discussing the possibilities for the site of end-of-life care as a part of advance care planning can prepare patients and relatives for in-the-moment decision making and improve end-of-life care.
Determining the preferred site of death may be an important component of advance care planning for patients with advanced chronic organ failure such as chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or chronic renal failure (CRF).
Indeed, a previous study showed that approximately 90% of the clinically stable outpatients with advanced COPD or CHF were able to indicate their preferred site of death.
To date, stability of preferences for site of death is unknown in patients with chronic organ failure. Therefore, it remains unknown whether previously documented preferences for site of death can serve as a reliable proxy in situations when patients are too ill to participate in decision making.
In studies that mainly included patients with cancer, agreement between the preferred site of death and the actual site of death ranged from 30% to 91%.
The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the brussels metropolitan region.
Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
Therefore, it may be difficult to achieve dying at the preferred site for these patients. Currently, it is unknown how often patients with advanced chronic organ failure die at the site they prefer.
The objectives of the present study were to examine the stability of preferences for site of death during one-year follow-up among patients with advanced COPD, CHF, or CRF, and to assess the agreement between the actual site of death and the site these patients indicated in advance as their preferred site.
Methods
Study Design
The present study is a secondary analysis of a multicenter, prospective, longitudinal study concerning palliative care needs among patients with advanced COPD, CHF, or CRF.
Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol.
Patients were visited in their home environment at baseline and every four months after baseline for a period of one year. If patients died during one-year follow-up, a bereavement interview was done with the closest relative. Two years after baseline, all patients, or their participating closest relatives, were contacted by telephone. For patients who died between one and two years after baseline, a bereavement interview was conducted with the closest relative two years after baseline. The Medical Ethical Committee of the Maastricht University Medical Centre+, Maastricht, The Netherlands, approved this study (MEC 07-3-054). The study was registered at the Dutch Trial Register (NTR 1552).
Patients
Clinically stable outpatients with advanced COPD, CHF, or CRF were recruited by their physician specialist at the outpatient clinic of one academic and six general hospitals in The Netherlands. Patients were eligible if they had a diagnosis of severe to very severe COPD (Global initiative for chronic Obstructive Lung Disease [GOLD] Stage III or IV),
advanced CHF (New York Heart Association [NYHA] Class III or IV), or advanced CRF (requiring dialysis). All patients provided written informed consent.
Measurements
The following outcomes were assessed at each visit, namely demographics, body mass index, smoking status, self-perceived mobility problems, self-perceived poor health status, patients' preferences for cardiopulmonary resuscitation and invasive mechanical ventilation,
This index comprises 17 conditions. Each condition is assigned a score of 1, 2, 3, or 6, depending on the risk of dying associated with each one. Scores are summed to provide a total score. Symptoms of anxiety and depression were assessed using the Hospital Anxiety and Depression Scale (HADS), consisting of an anxiety subscale (HADS-A) and a depression subscale (HADS-D).
Total scores for each subscale can range from zero (optimal) to 21 (worst) points. Generic health status was assessed using the EuroQol-5 Dimensions, a five-item questionnaire including mobility, self-care, usual activity, pain/discomfort, and anxiety/depression.
Each item has three levels, namely no problems, some problems, and extreme problems. An index score is provided, which ranges from −0.59 (worst) to 1.0 (best).
In addition, care dependency was assessed using the Care Dependency Scale, consisting of 15 items regarding basic and instrumental activities of daily living.
The score ranges from 15 (worst) to 75 (best) points. Patients with a Care Dependency Scale score of 68 points or less are considered to be care dependent.
Finally, patients' preferences for site of death were assessed using the following question: “If your health deteriorates so severely that you are likely to die, where would you prefer to die?” Response options were, namely home, hospital, hospice, care home, or do not know. If possible, the patient was not interviewed in the presence of the family caregiver.
The member of the research team who performed the home visits also performed the bereavement interview. Aspects concerning end-of-life care were assessed using a short questionnaire consisting of questions about the actual site of death, whether the death of the patient was expected or unexpected for the relative, and the use of life-sustaining treatments before death.
Statistical Analysis
Statistics were done using IBM SPSS statistics 19.0 (IBM, Corp., Software Group, Somers, NY). Categorical variables are described as frequencies; continuous variables were tested for normality and are presented as mean and standard deviation (SD) or median (interquartile range [IQR]). Baseline characteristics were compared between patients who preferred to die at home at baseline and patients who did not prefer to die at home using Chi-square tests for categorical variables and independent sample t-tests or Mann-Whitney U tests for continuous variables, as appropriate. We used frequencies to describe one-year stability of preferences for site of death in patients who completed one-year follow-up. Agreement between the preferences for site of death at baseline and four, eight, and 12 months was determined using Cohen's kappa. We also used frequencies to describe the stability of preferences for site of death among the subgroup of patients who died within two years after baseline. In addition, agreement between the actual site of death and the site patients indicated in their last interview before the death was determined using Cohen's kappa. A value for kappa between 0.81 and 0.99 was defined as almost perfect agreement, 0.61–0.80 as substantial agreement, 0.41–0.60 as moderate agreement, 0.21–0.40 as fair agreement, and ≤0.20 as poor agreement.
In total, 265 patients (105 patients with COPD, 80 patients with CHF, and 80 patients with CRF) were included at baseline. Most COPD patients had a very severe degree of airflow limitation (73.3% GOLD Stage IV). Patients with CHF were mainly classified as NYHA Class III (92.5%). Most patients with CRF underwent hemodialysis (96.2%). The proportion of eligible patients who participated in the study was 58.9% (Fig. 1). Some differences were present between eligible patients who participated in the study and eligible patients who refused participation. Participants were younger than nonparticipants (mean [SD] age: 68.0 [12.6] vs. 74.0 [10.9] years, P<0.01). In addition, participants were more often male than nonparticipants (63.0% vs. 49.2%, P<0.05). Finally, participants with COPD had more advanced disease than patients with COPD who refused participation (proportion GOLD Stage IV: 73.3% vs. 38.7%, P<0.05). The proportion of CHF patients classified as NYHA Class III was comparable for participants and eligible patients who refused participation (92.5% vs. 91.5%, P>0.05).
Fig. 1Flowchart of included patients and reasons for withdrawal. COPD=chronic obstructive pulmonary disease; CHF=chronic heart failure; CRF=chronic renal failure.
All home visits were completed by 206 patients (77.7% of the enrolled patients). Most patients were married or lived with a partner. Most patients had mobility problems (Table 1). In total, 59 patients (22.3%) did not complete one-year follow-up: 24 patients (9.1%) died, seven patients (2.6%) underwent renal transplantation, and 28 patients (10.6%) withdrew because of other reasons (Fig. 1).
Table 1Baseline Patient Characteristics of Patients Who Completed One-Year Follow-Up and Patients Who Died Within Two Years
Characteristics
Completed One-Year Follow-Up (n=206)
Died Within 2 Years (n=66)
Disease
COPD
86 (41.8)
21 (31.8)
CHF
61 (29.6)
24 (36.4)
CRF
59 (28.6)
21 (31.8)
Age (y)
67.2 (13.1)
73.8 (9.5)
Male
132 (64.1)
41 (62.1)
Married/living with partner
135 (65.5)
43 (65.2)
Current smokers
41 (19.9)
12 (18.2)
Level of education high school or more
168 (81.6)
54 (81.8)
Body mass index (kg/m2)
26.7 (6.2)
26.6 (6.7)
Charlson Comorbidity Index score (points)
3.4 (2.0)
4.0 (2.2)
Self-perceived mobility problems
161 (78.2)
59 (89.4)
Self-perceived poor health
29 (14.1)
12 (18.2)
EQ-5D index score (points)
0.58 (0.30)
0.44 (0.33)
HADS score (points)
HADS-A
5.1 (4.0)
5.7 (4.8)
HADS-D
5.6 (4.0)
7.1 (4.0)
Care Dependency Scale (points)
68.1 (7.5)
62.1 (10.3)
Previous discussion of preferences regarding CPR or mechanical ventilation
A total of 66 patients (24.9%) died within two years after enrollment. In general, these patients had an impaired health status and were care dependent (Table 1). Median (IQR) number of days between the last interview in the study and dying of the patient was 155 days (96–253).
Preferences for Site of Death and Changes in These Preferences
At baseline, 106 of the patients who completed one-year follow-up (51.5%) preferred to die at home; 61 patients (29.6%) in the hospital, 21 patients (10.2%) at a care home or hospice, and 18 patients (8.7%) did not know where they preferred to die. During one-year follow-up, 126 patients (61.2%) changed their preference for site of death at least once (Fig. 2). Changes occurred in all directions. For example, 12 patients who preferred to die in the hospital at baseline reported at four months that they preferred to die at home; and eight patients who preferred to die at home at baseline, preferred to die in the hospital at four months. The level of agreement in preferred site of death between baseline and four months was moderate (κ=0.52, P<0.005). The level of agreement in preferred site of death between baseline and eight months and between baseline and 12 months was fair (κ=0.30, P<0.005 and κ=0.32, P<0.005, respectively).
Fig. 2Comparison of preferences for site of death at baseline, 4, 8, and 12 months. Arrows indicate changes of individual patient preferences (numbers indicate number of patients, n=206). Size of arrows is related to the number of patients in each category. Arrows and numbers for the category “don't know” are not shown. Therefore, the sum of the numbers in the arrows will not be equal to the numbers in the columns. *Includes care home and hospice.
At baseline, a higher proportion of patients who preferred to die at home was married or lived with a partner than those who did not prefer to die at home (76.1% vs. 55.1%, respectively, P<0.001). Other patient characteristics reported in Table 1 were not related to preferring to die at home at baseline (P>0.05).
A total of 55 of the 66 patients (83.3%) who died during the two-year follow-up completed two or more study visits, and 29 of these patients (43.9%) completed all four visits. In total, 22 of the 55 patients (40%) who died within two years and completed at least two study visits changed their preference for site of death during follow-up visits, whereas 33 patients (60%) did not change their preference.
Circumstances Around Death
Bereavement interviews were conducted with relatives of 62 patients who died within two years after enrollment: 39 partners (59.1%), 16 sons/daughters (24.3%), two son-in-law/daughter-in-law (3.0%), three brothers/sister (4.5%), and two cousins (3.0%). Four patients (6.1%) did not have a relative, and for these patients a professional caregiver was contacted. Median (IQR) number of days between death of the patient and the bereavement interview was 31 days (8–116).
For the closest relatives of 35 patients (53.0%), death was unexpected. During the last home interview before their death, 34 patients (51.5%) reported to prefer to die at home, 22 patients (33.3%) in the hospital, eight patients (12.2%) at a care home or hospice, and two patients (3.0%) could not indicate a preference. Most patients (n=38, 57.5%) died in the hospital: 29 patients (43.9%) in a regular ward, seven patients (10.6%) in the intensive care unit, one patient (1.5%) in the emergency room, and one patient (1.5%) in the operating room. Only 18 patients (27.3%) died at home, and 10 patients (15.2%) died in a care home or hospice; 39.4% of the patients died in the preferred site as indicated in the last visit before their death (Fig. 3). Agreement between the actual and preferred site was poor (κ=0.07, P=0.42). There was no relationship between dying in the preferred site and dying being unexpected or expected (P>0.05).
Fig. 3Comparison of last reported preference for site of death and actual site of death (numbers indicate number of patients, n=66). Size of arrows is related to the number of patients in each category. *Includes care home and hospice.
A total of 12 of the 66 patients (18.2%) who died within two years after baseline reported during every study visit to prefer to die at home. Two of these patients (16.7%) actually died at home, one patient (8.3%) died in a care home, and nine patients (75.0%) died in a hospital.
Discussion
Key Findings
Most patients preferred to die at home. However, 61% of the patients changed their preference for site of death at least once during one-year follow-up. Most patients died in the hospital. Only 39% of the patients died in the preferred site as indicated in the visit before their death.
Instability of Preferences for Site of Death and Actual Site of Death
The present study is the first to show the instability of preferences for site of death among patients with advanced chronic organ failure. Indeed, 61% of the patients changed their preference for site of death at least once during a year. A qualitative study concerning general practitioners' and community nurses' views of exploring patients' preferred site of death also suggested that site of death preferences are dynamic and/or defined incompletely.
Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.
Indeed, statements on preferences for site of death are made in the context of important factors such as social relationships, physical limitations, interactions with health professionals, and health services.
Although most patients reported to prefer to die at home, most patients died in the hospital. In the present study, only 39% of the patients died at the preferred site. This is in accordance with the study from Cohen et al.
that showed that only 35% of the patients on dialysis died at their preferred site. Agreement between the actual site of death and the preferred site patients indicated during the last interview before their death was poor. Escobar Pinzon et al.
Factors such as optimal symptom management, preparation for death, and achieving a sense of completion may be considered as more important for end-of-life care by patients and their families than dying at home.
Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.
Patients' actual preferences for site of death are influenced by the presence of distressing symptoms, feeling vulnerable or frightened, feeling the need for a safer environment, being afraid of becoming a burden for their family, and worries about their family witnessing their suffering.
Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.
Moreover, family caregivers of patients with end-stage COPD or CHF may experience severe dyspnea as a threat for caring at home, and acute dyspnea may be a reason for family caregivers to call an ambulance.
Future studies should explore whether and to what extent this impacts agreement between preferred and actual site of death in these patients, and how patients and family caregivers can be supported to achieve dying at the preferred site. Indeed, palliative care involvement, physician support, and family support have been suggested to improve agreement between preferred and actual site of death.
The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the brussels metropolitan region.
The aim of advance care planning should be to prepare patients and their loved ones to participate with professional caregivers in making the best possible in-the-moment decisions.
In fact, open communication about goals for end-of-life care is important to prevent assumptions by professional caregivers that are inconsistent with the preferences of the patient and family caregiver.
Indeed, discussing preferred site of death as part of the process of advance care planning may be a way to help families prepare for and recognize crises so that they can have plans in place to manage them with the patients' goals and preferences in mind. Future studies should explore whether discussing the possibilities of site for end-of-life care with patients and closest relatives as part of advance care planning can prepare patients with advanced chronic organ failure and their relatives for in-the-moment decision making concerning the site of death.
The present study shows that death of the patient was unexpected for more than half of the bereaved relatives. A previous study in patients with COPD has shown that 44% of the bereaved relatives were not aware of the fact that their loved one might die from their disease and the most of these relatives would have preferred to know.
In addition, a retrospective study among the relatives of deceased patients on dialysis has shown that 49% did not expect the death of their loved one.
Health care providers report the unpredictable disease trajectory without clear transitions toward the end of life as an important barrier to communication about end-of-life care in patients with advanced chronic organ failure.
Nevertheless, the present study confirms the importance of discussing the uncertainty in prognosis and the possibility of unexpected dying with closest relatives of patients with advanced chronic organ failure.
Several methodological issues should be considered in interpreting the results. First, it may be possible that some patients provided their preferences for site of death in ideal circumstances, whereas other patients provided their preferences in the current circumstances. Because circumstances may impact the preferred site of death,
this might have influenced our results. Second, we assessed the agreement between the preferred and actual site of death in 66 patients. This relatively small sample size may limit the generalizability of our results. Third, we compared the actual site of death with the preference for site of death that patients indicated during the last interview in the study. We do not know whether the preferred site of death changed during the last days of life and, therefore, the actual preference at time of death remains unknown. Fourth, the present study did not assess the views of family caregivers concerning the preferred site of death. A study that mainly included patients with cancer has shown that although 30% of the patients did not die in their preferred site, for 93% of the family caregivers the site where patients died was felt to be the right place.
Moreover, disagreement may exist between the patient's preference and the perception of the family caregiver. In fact, family caregivers more frequently report a preference for an institutional death than patients.
Therefore, future studies are necessary to study the interaction between the patient's and family caregiver's preference for the site of death. Finally, during the bereavement interview, we did not collect data about social support, health services provided, and utilization of palliative care. Therefore, we do not know whether or not this might have influenced the agreement between the preferred and actual site of death.
Conclusions
Only 39% of the patients in the present study died in the site they previously indicated as the preferred site of death. However, preferences for site of death changed in 61% of the patients with advanced chronic organ failure and in 40% of the patients with end-stage disease. Therefore, advance directives concerning preferred site of death may not serve as a reliable proxy in situations when patients are unable to participate in decision making. However, discussing preferred site of death as a part of the process of advance care planning may be a way to help families prepare for and recognize crises so that plans can be in place to manage them with the patients' goals and preferences in mind. Future studies should explore whether discussing possibilities for the site of end-of-life care as part of advance care planning can prepare patients and relatives for in-the-moment decision making and improve end-of-life care. Finally, several instruments used to measure the quality of death include items concerning the preferred site of death.
The instability of preferences for site of death should be taken into account when using these instruments and in considering agreement between actual and preferred site of death as a quality criterion for health care programs.
Disclosures and Acknowledgments
This project was supported by: Proteion Thuis, Horn; CIRO+, Centre of Expertise for Chronic Organ Failure, Horn; Grant 3.4.06.082 of The Netherlands Lung Foundation, Leusden; The Weijerhorst Foundation, Maastricht; and Stichting Wetenschapsbevordering Verpleeghuiszorg, Utrecht, The Netherlands. No funding source had any role in study design, or in the collection, analysis, interpretation, or presentation of the information. The authors declare that there are no financial or personal relationships with individuals, organizations, or companies that might be perceived to bias the work.
The authors are grateful to research nurses Els Verstraeten, RN and Jamila Dekker-Heuts, RN, for data collection and to Linda Koolen for input of the data. The authors thank the doctors of the following collaborating hospitals and departments for their participation in this study: Departments of Respiratory Medicine, Cardiology, and Internal Medicine, Maastricht University Medical Centre+, Maastricht; Departments of Respiratory Medicine and Internal Medicine, Laurentius Hospital, Roermond; Department of Cardiology, St. Jans Gasthuis, Weert; Departments of Internal Medicine and Cardiology, Màxima Medical Centre, Veldhoven/Eindhoven; Departments of Respiratory Medicine and Internal Medicine, Catharina Hospital, Eindhoven; Departments of Cardiology and Internal Medicine, Atrium Medical Centre, Heerlen; and Department of Internal Medicine, Orbis Medical Centre, Sittard, The Netherlands.
References
Smith R.
A good death. An important aim for health services and for us all.
The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the brussels metropolitan region.
Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol.
Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.
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