Assessing Differences in Care Needs and Service Utilization in Geriatric Palliative Care Patients

Article Outline

• Abstract
• Introduction
• Methods
  • Subjects
  • Data Collection
    • Patient Characteristics
    • Recommendations/Implementation
    • Outcomes
  • Statistical Analysis
• Results
  • Patient Characteristics
  • Advance Care Planning
  • Palliative Care Services
• Discussion
  • Differences in Diseases and Reasons for Referral
  • Differences in Treatment
  • Implications for the Palliative Care Team
  • Limitations of the Study
• Conclusion
• Acknowledgements
• References
• Copyright

Abstract 

Little is known of the palliative care needs and experiences of older adults. This study explored whether these needs differed from those of younger patients. We performed a retrospective data analysis of 1184 palliative care consultations in a major teaching hospital. There were statistically significant differences across age groups in patient demographic and clinical characteristics, advance care planning, and service utilization. Patients over age 80 had a reduced prevalence of cancer, a higher prevalence of dementia and incapacity, more frequent decisions to withhold or withdraw life-sustaining treatments, and fewer interventions for symptom management. The palliative care needs of older adults appear to be substantially different from those of younger patients. Dementia and incapacity profoundly influence decision-making, requiring more time and communication with patients and families.

Keywords:  Palliative care, geriatrics, palliative care service, advance directives, life-sustaining treatment, dementia

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Introduction 

Palliative care consists of the active total care of patients with serious and life-threatening illness, and involves an interdisciplinary approach to symptom management and preservation of function and quality of life. The majority of palliative care studies to date have focused primarily on younger patients with cancer and AIDS. Comparatively little research has focused on the end of life needs and service utilization of older adults (e.g., those over age 70), who typically die from chronic illnesses.

A better understanding of the palliative care needs of older adults is necessary for several reasons. The vast majority of deaths in America occur among the elderly. The median age at death in the United States is 77 years and individuals 65 and over account for more than 70% of deaths.¹, ² Evidence indicates that the dying elderly often do not receive appropriate palliative care at the end of life.³, ⁴ The elderly population is growing rapidly in comparison to younger age groups.⁵ The proportion of the U.S. population age 65 and over, currently 13%, is projected to be 20% by 2030.¹ Individuals 85 and over form the fastest-growing population segment, which is expected to more than double in number (from 3.6 million to 8.5 million) by 2030.¹ The elderly suffer from an increased burden of chronic conditions of uncertain prognosis and make significant use of healthcare resources. Adults 65 and over currently account for 35% of total personal healthcare expenditures and 48% of all days of care in nonfederal short-stay hospitals.¹ Care of the elderly often involves medically and ethically complex treatment decisions. Patient age may have significant effects on decision-making concerning life-sustaining treatment⁶, ⁷ and the provision of end of life care in both hospitals and community settings.⁸

The purpose of this study was to assess the comprehensive needs and service utilization of geriatric palliative care patients. The study consisted of a detailed review of data relating to all consultations of a palliative care service over a 38-month period. We examined whether patients 80 and over differed from younger individuals in terms of patient characteristics, palliative care service recommendations, advance care planning, or the withholding or withdrawal of life sustaining treatments.

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Methods 

Subjects 

We describe data from all consecutive patients referred by their attending physicians to the palliative care service of an academic teaching hospital over a 38-month period (April 29, 1997 to June 29, 2000). All patients are seen within 24 hours of the consultation request by the palliative care service. Data from patients known to the service from a prior hospitalization were excluded because many of the recommendations were already in place. Non–terminally ill patients referred for pain management only were also excluded, as were patients enrolled in a separate study involving mandatory palliative care service evaluation of all cancer patients in the Medical Intensive Care Unit (MICU).

The palliative care team—consisting of a physician; a nurse; and rotating residents, fellows, and medical students—delivers consultative services to referring primary physicians. The hospital house staff, nurses, social workers, and clergy may be involved in the implementation of team recommendations.

Palliative care consultations typically encompass, but are not limited to, recommendations in the following areas: discussion about prognosis and goals of care (with patient, family, hospital staff, patient's attending); discussion about and documentation of advance directives (resuscitation status, designation of a health care agent, completion of a living will); discussion about foregoing life-prolonging treatments and/or diagnostic interventions; patient and/or family support (including spiritual needs); discharge planning; and symptom management.

A detailed description of the palliative care service has been published.¹

Data Collection 

We collected standard demographic and patient characteristic variables. Patient clinical characteristics assessed included primary disease at consult, chief complaint at admission, primary diagnosis, and a history of dementia. Lengths of stay (LOS) in palliative care, in hospital, and in hospital prior to palliative care consult were analyzed. We also collected information concerning the presence or absence of Do Not Resuscitate (DNR) orders and advance directives at time of consult. We analyzed data on referring attending physician, medical service, and source of referral (e.g., house staff, social worker, nurse, etc.).

Recommendations concerning several advance care planning instruments (DNR orders, health care proxies, non-hospital DNR orders, and living wills) were recorded. Data on communication between the palliative care team and patients, family, and staff concerning goals of care were analyzed. Recommendations concerning symptom management, decisions to withhold or withdraw life-prolonging treatment, and discharge options were also assessed.

We reviewed sites of discharge as well as services offered upon discharge. The in-hospital death rate, days lived after hospital discharge, and sites of death were also analyzed.

Statistical Analysis 

The study population of 1184 first consults was divided into three cohorts: those less than 65 (n = 452), those 65 to 79 (n = 404), and those 80 and over (n = 328). All analyses concerned comparison of these cohorts. Chi-square tests for categorical variables and one-way analysis of variance (ANOVA) for continuous variables were used to compare dependent variables for the three age groups.

All statistical analysis was performed using SPSS (Statistical Package for the Social Sciences).

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Results 

Patient Characteristics 

Patient demographic and clinical characteristics are in Table 1.

Table 1. Patient Characteristics

Patients 80 and over were significantly more likely to be women, white, and nursing home residents. Cancer as the primary disease at palliative care consult was significantly less prevalent in patients 80 and over, while dementia was significantly more prevalent in this age group. Among those 80 and over, 17% (56 of 323) had a diagnosis of a dementing illness as the reason for referral to palliative care, compared to 5% (19 of 399) of patients 65 to 79 and 1% (4 of 447) of patients under 65. Additionally, 32% (85 of 267) of patients 80 and over referred to palliative care for another reason also had a diagnosis of dementia, compared to 11% (42 of 380) of patients 65 to 79 and 4% (20 of 443) of patients under 65. Patients 80 and over were less likely to have capacity to participate in decisions about medical therapy [29 of 104 (28%) vs. 68 of 133 (51%) vs. 89 of 148 (60%) for 80 and over, 65 to 79 and under 65, respectively (P < 0.001)]. Recording of capacity status began in June 1999, accounting for the smaller number of data points for this item.

Patients 80 and over had a significantly shorter mean LOS in the hospital [mean LOS 16.18 days, vs. 22.09 days for patients 65 to 79 and 24.8 days for patients under 65 (P < 0.001)]. The 80 and over age group also had significantly shorter mean LOS prior to referral for palliative care consultation. Patients 80 and over were more likely to be discharged to a nursing home.

No significant differences were observed across age groups for sources of referrals to palliative care, LOS following referral for palliative care, services offered at discharge, survival following hospital discharge, or site of death. Attending physicians accounted for 62% (203 of 328) of referrals among patients 80 and over, 58% (233 of 404) of referrals among patients 65 to 79, and 60% (270 of 452) of referrals for patients under 65. House staff were responsible for 22% (73 of 328) of referrals among patients 80 and over, and 21% of referrals of patients 65 to 79 (85 of 404) and patients under 65 (95 of 452).

We analyzed medical service data for all consults. Medicine was the source of 38% (125 of 328) of patients 80 and over, compared to 50% (201 of 404) of patients 65 to 79 and 47% (211 of 452) of patients under 65. Geriatrics was the source of 23% (74 of 328) of patients 80 and over, compared to 7% (27 of 404) of patients 65 to 79 and 1% (5 of 452) of patients under 65.

Advance Care Planning 

Patients 80 and over were significantly more likely to have a DNR order present at the time of the initial palliative care consult [120 of 324 (37%) vs. 101 of 404 (25%) vs. 116 of 446 (26%) for 80 and over, 65 to 79 and under 65, respectively (P = 0.001)] and were more likely to have DNR orders issued at the recommendation of the palliative care service [240 of 329 (73%) vs. 262 of 403 (65%) vs. 270 of 450 (60%) for 80 and over, 65 to 79 and under 65, respectively (P = 0.024)]. No significant differences were noted across the three age cohorts with respect to other advance directives (living wills and health care proxies).

An analysis of recommendations to withhold or withdraw life-sustaining treatments, as well as the implementation of such recommendations, is in Table 2. There were more recommendations to withhold or withdraw three types of life-sustaining treatments in the 80 and over cohort: artificial nutrition and hydration; phlebotomy and other needlesticks; and antibiotics.

Table 2. Withholding/Withdrawing of Life-Prolonging Treatment

Palliative Care Services 

An analysis of recommendations concerning communication and symptom management is in Table 2. There was significantly less communication concerning goals of care between the team and the patient in the 80 and over age group with a reciprocally greater amount of communication between the team and the patient's family in this age group.

There were significant inter-cohort differences in the frequency with which recommendations were made to intervene for five of ten symptoms reviewed. Among patients 80 and over, there were fewer interventions for pain, nausea, anxiety, and other symptoms. There were more interventions in the 80 and over age group for dyspnea.

There were no significant differences across age groups in the frequency with which recommendations in each area were implemented. Recommendations concerning communication and symptom management were implemented to the greatest extent—approximately 95% of the time in each cohort. Recommendations to withhold or withdraw life-prolonging treatments were implemented to a lesser degree—from 85% of the time among those 80 and over to 80% of the time among those under 65.

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Discussion 

This study found significant differences in the palliative care experiences of patients 80 and over compared to younger individuals. In the older group, cancer was less prevalent, and dementia and decisional incapacity were more prevalent. Accordingly, we observed less palliative care team communication with patients, and more communication with patient families in this age group. There were more recommendations to withhold or withdraw life-sustaining treatments (artificial nutrition and hydration, phlebotomy and other needlesticks, and antibiotics) among patients 80 and over. There were also fewer interventions for management of symptoms among these patients. Patients 80 and over had shorter mean hospital LOS and LOS prior to palliative care consult. These patients were more likely than their younger counterparts to be women and to live in, and be discharged to, a nursing home.

Differences in Diseases and Reasons for Referral 

In our study, cancer was the leading primary disease at palliative care consult for each age cohort, a finding reported in other studies.⁹, ¹⁰, ¹¹ However, cancer was significantly less prevalent among patients 80 and over, accounting for only 38% of referrals (compared to approximately 60% of referrals among patients under 80). In the 80 and over cohort, three conditions (dementia, stroke or coma, and heart disease) accounted for 40% of all consults. By contrast, among patients under 80, only 20% of patients experienced these conditions.

That a variety of other conditions account for 62% of consults among those 80 and over suggests that the palliative care needs of this age group may not be adequately met by a cancer model of palliative care that typically anticipates a short-term period of decline and functional dependency before death. By contrast, older palliative care patients are more likely to suffer and die from chronic illnesses preceded by lengthy periods of decline and functional impairment.

Our study indicates a high prevalence (44%) of dementia among patients 80 and over. Dementia was the primary disease at consult for 17% of this age group; in addition, 32% of those with a different primary illness had a secondary diagnosis of dementia. The high prevalence of dementia has numerous implications for treatment. End-stage dementia is a terminal illness with a very poor prognosis and high 6-month mortality.³, ¹² Research has reported a paucity of palliative measures or perspective in the treatment of patients with advanced dementia superimposed on other conditions.³

Decision-making concerning goals of care is greatly complicated by the high prevalence of dementia among patients 80 and over. In our study, only 28% of these older patients had decisional capacity. While dementia exists on a continuum of severity, and a diagnosis of dementia is not synonymous with an overall lack of capacity to make healthcare decisions,¹³, ¹⁴ the widely held assumption that dementia implies incapacity profoundly influences physician–patient interaction and care planning.¹⁵, ¹⁶ Our study found a significantly reduced level of communication concerning goals of care between patients 80 and over and the palliative care team, leading to greater family involvement in decision-making. While greater family input in situations of impaired patient capacity is necessary, research indicates a low rate of concordance between actual patient preferences and decisions of family members and physicians as surrogate decision-makers.¹⁷, ¹⁸

Advance directives, which let patients communicate treatment preferences before the loss of capacity and/or ability to communicate, seem especially appropriate for patients 80 and over. However, our research found no significant difference across age cohorts in either the prevalence of these instruments at consult or their creation subsequent to discussion with the palliative care team. Reported rates of completion of advance directives among demented patient populations have been quite variable, ranging from 6%¹⁹ to 70%.²⁰ In one study, 60–70% of persons with advanced dementia did not have an advance directive, and only 7% had a documented decision to forego a burdensome treatment other than cardiopulmonary resuscitation.³

Symptom assessment and treatment among patients 80 and over is compromised by the prevalence of dementia and incapacity. While there is evidence that self-reports of pain by the cognitively impaired are valid,²¹ medical personnel exhibit a distrust of these reports.²² This bias may contribute to the well-documented under-recognition and under-treatment of pain in the cognitively impaired.²³, ²⁴, ²⁵ Our study found fewer team recommendations for symptom management interventions in patients 80 and over. Whether this is truly reflective of a lower symptom burden is unclear due to the dementia, incapacity, and lack of self-reporting seen in this cohort. In addition, older patients tend not to report or underreport pain,²⁶, ²⁷ perhaps because of fear that they will not be taken seriously.²⁸

Differences in Treatment 

There were more recommendations to withhold or withdraw life-prolonging treatments among patients 80 and over. That older patients with coronary artery disease, breast cancer, and other cancers receive generally less treatment has been reported elsewhere.²⁹, ³⁰, ³¹, ³², ³³ Diminished utilization of high intensity interventions and reduced frequency of invasive procedures in very old patients independent of diagnosis have also been described.⁷, ³⁴

That fewer life-sustaining treatments (LST) were provided to patients 80 and over may reflect appropriate healthcare. As this program is located in New York State, patients who had LSTs withheld or withdrawn had either appointed a health-care proxy, or, in the absence of a proxy, clear and convincing evidence of their wishes was available to the treating medical team. A recent study found that a majority (70%) of these patients prefers comfort care to life extension through painful or burdensome measures,³⁵ and research indicates their reduced preference for life-extending care.³⁰ We found a higher prevalence of DNR orders at consult and a higher frequency of DNR orders completed subsequent to consult among patients 80 and over. That increased age is associated with a higher rate of first DNR orders³⁶ and a greater likelihood of writing orders while hospitalized²⁹ has also been reported.

Alternatively, although less likely, the difference in application of LSTs between the age groups may have resulted from biases of surrogate decision-makers and physicians. Physicians are more likely to mistakenly think a patient prefers comfort to life-prolonging care when the patient is older, and are less likely to want life-prolonging care if in the patient's situation when the patient is older.³⁰ Both physicians and family members have been shown to underestimate older patients' desire for life prolonging care.³⁰

We found no significant differences across age groups in the in-hospital death rate or mean survival time following hospitalization. Patients 80 and over were more likely to be discharged to a nursing home; however, the greatest proportion of non-hospital deaths in this age group occurred in in-patient hospice. The reasons for this difference in site of death are unclear.

Implications for the Palliative Care Team 

Given the prevalence of dementia and incapacity among patients 80 and over, the palliative care team needs more time to structure family meetings and arrive at goals of care for these patients. Our study found significantly less communication between team and patient, and significantly more communication between team and patient family, in this cohort. Interaction with families is time-consuming and difficult to coordinate. Given the aforementioned lack of congruence sometimes seen between patient and family treatment preferences, such meetings require care on the part of the team to ensure that patient desires are respected.

Palliative care teams must address the uncertain prognoses associated with various conditions afflicting patients 80 and over. The prognoses of chronic illnesses typically seen in older adults are less well-defined than the survival times associated with most neoplasms.³⁷ Team involvement earlier in the course of illness may prove beneficial. It has been suggested that palliative care may be appropriate for the longer-term management of conditions such as heart failure, emphysema, liver failure, degenerative neurologic diseases (e.g., Parkinson's Disease), and Alzheimer's Disease and related dementias.³⁸

Limitations of the Study 

There are several limitations to this study that should be noted. First, our results reflect the experiences of patients at one hospital and our findings may not be generalizable to other institutions and settings. Second, we have characterized a patient population in terms of patient care, treatment decision, and medical outcome variables. We have not developed a model to predict interrelationships among these variables. Third, in order to describe our study population, we have depicted as dichotomous certain variables which could be viewed as existing along a continuum (i.e., dementia). Our dichotomous view may obscure certain relationships while illuminating others. Finally, we examined information relating to patients referred to the palliative care service, and thus our data may be influenced by referral bias. Our results may not reflect the experiences of patients not followed by the palliative care program.

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Conclusion 

This study found significant differences in the palliative care experiences of patients 80 and over compared to younger individuals. The high prevalence of dementia (44%) and incapacity (72%) among these patients may profoundly influence decision-making concerning goals of care and symptom assessment and treatment. Less communication was seen between the palliative care team and these patients. The team thus requires more time and greater communication with patient families to adequately care for these individuals. There were more recommendations to withhold or withdraw life-sustaining treatments among patients 80 and over, an observation that may be related to physician/family bias, prevalence of dementia, or an appropriate balancing of the health care benefits and burdens of life prolonging interventions. There were also fewer interventions for management of symptoms among these patients, perhaps because assessment of symptom burden is compromised by the prevalence of dementia and reduced capacity for communication.

We encourage further research to ascertain whether the high prevalence of dementia and incapacity in hospitalized palliative care patients over age 80 seen in our study is reflective of their prevalence at a national level. The relationships of capacity and dementia to symptom assessment, treatment approaches, and utilization of advance directives are important areas of future research. Research will be necessary to gauge the effectiveness of palliative care in the management of chronic conditions of uncertain prognosis.

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Acknowledgements 

This research was supported by a grant from the Fan Fox and Leslie R. Samuels Foundation/American Federation for Aging Research Medical Student Geriatric Scholars Program. Drs. Meier and Morrison are Open Society Institute Project on Death in America Faculty Scholars. Dr. Meier is the recipient of an Academic Career Leadership Award (K07AG00903) from the National Institute on Aging. Dr. Morrison is the recipient of a Mentored Clinical Scientist Development Award (K08AG00833) from the National Institute on Aging and Paul Beeson Physician Faculty Scholar in Aging Research.

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