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Biomedical subjects

Susan W Tolle

Publications and source records attributed to Susan W Tolle.

At least 19 recordsLinked to original sources
PubMed2006

Survival, mortality, and location of death for patients seen by a hospital-based palliative care team.

BACKGROUND: Little is known about patient outcomes after discharge planning by inpatient palliative care teams. A major difficulty is that successful discharge planning often effectively limits or ends the team's relationship with the patient and family. The goal of this study was to gather a clearer picture of what happened to our palliative care consult patients after discharge. METHODS: This was a longitudinal survey of all patients seen over a one year period by the inpatient palliative care team at Oregon Health & Science University (OHSU). Data were recorded by team members at the time of consultation and supplemented by data from administrative databases and death certificates. RESULTS: The team provided consults to 292 unique patients: 60% were younger than age 65, 39% were female, and 16% were members of an ethnic or racial minority. Almost three quarters of patients carried a non-cancer diagnosis. Of the 292 patients, 37% died in hospital and 63% were discharged alive, either to home (54%), nursing facilities (20%), or inpatient hospice (26%). Of the 183 patients discharged alive, 38% died within 2 weeks, 32% died between 2 weeks and 6 months, 25% were alive at 6 months, and 4% were unknown. Of note, only 10% of patients seen by the consult service were readmitted to OSHU within 30 days, and only 5% of those discharged alive from OHSU ultimately died in an acute care hospital. DISCUSSION: We characterized patient outcomes following inpatient palliative care consultation: where patients are discharged, how long they live, and where they die. Two thirds of patients were able to be discharged, even when death occurred within two weeks. The low rates of readmission and death in an acute care hospital support that the decision to discharge the patients was reasonable and the discharge plan was adequate. Hospital based palliative care teams can play an important and unique role in discharge planning--allowing even patients very near death to leave the hospital if they wish.

Aged↗
PubMed2005

Men as caregivers at the end of life.

BACKGROUND: Few studies have focused on men as caregivers at the end-of-life. The objective of this secondary data analysis was to examine the experiences of men involved in end-of-life caregiving, focusing on caregiver strain. METHODS: We used a random sample of Oregon death certificates to telephone survey family caregivers of Oregonians who had died 2 to 5 months earlier in private homes, nursing homes, and other community-based settings. Measurements included single-item indicators and embedded scales to measure caregiver strain and perceived decedent symptom distress. For the 25 husbands, sons, wives, and daughters who reported the highest levels of strain, we also analyzed caregivers' description of the decedent's last few days of life. RESULTS: The sample included 1384 caregiver interviews from a pool of 3048 death certificates. Men constituted 29% of the caregivers, including 15% sons, 9% husbands, and 5% others. In a linear regression model, male gender was a significant predictor of lower caregiver strain (p < 0.001). The strongest predictor of high end-of-life caregiver strain was the severity of the decedents' symptom distress. The qualitative analysis revealed that men used fewer words than women did to describe their experiences, and, despite subsequently reporting the highest levels of caregiving strain, only 15% of men spontaneously mentioned their own struggles. CONCLUSIONS: As caregivers at the end of life, men are less common and less likely to report caregiver strain and decedent symptom distress. Health care professionals should actively ask men about these issues and listen carefully, as their responses may be brief and understated.

Aged↗
PubMed2004

Increased family reports of pain or distress in dying Oregonians: 1996 to 2002.

The aim of this study was to compare the prevalence of family-reported pain or distress during the last week of decedents' lives during two times: November 1996 to December 1997 and June 2000 to March 2002. We telephone-surveyed family caregivers of Oregonians who had died 2 to 5 months previously in private homes, nursing homes, and other community-based settings. Caregivers were asked to rate the level of pain or distress during the decedent's final week of life on a four-point scale. Data were collected from 340 respondents from 1996-1997 and 1384 respondents from 2000-2002. We found that the prevalence of family-reported moderate or severe pain or distress (compared to comfortable or mild pain or distress) in Oregon decedents increased from 30.8% in 1996-1997 to 48% in 2000-2002. Using a logistic regression model to control for differences between the two sampling times and other predictors of increased pain or distress, decedents in 2000-2002 remained approximately twice as likely to be reported to be in moderate or severe pain or distress during the last week of their lives (Time 2 vs. Time 1, odds ratio [OR] 2.09, 95% confidence interval [CI] 1.59-2.74). We discuss possible explanations for this finding, including media effect created by the publicity surrounding the second ballot measure and subsequent availability of physician-assisted suicide in November 1997. Alternatively, trends in under funding and under staffing of hospice and community nursing resources may have disproportionately affected care in the final week of life, which depends heavily on skilled nursing care for effective symptom control and psychosocial support of the patient and family.

Aged↗
PubMed2004

Trends in opioid use over time: 1997 to 1999.

Substantial resources have been spent to improve pain control for dying patients, and increased opioid administration has been presumed. Oregon has been a consistent leading state in per capita use for morphine for the past 10 years, as recorded by the Automation of Reports and Consolidated Orders System (ARCOS). Health policy experts, extrapolating from World Health Organization methods, have suggested these data are indicative of the quality of end-of-life care in Oregon. To determine whether trends in opioid prescription at the state and national levels reflect increased opioid use for inpatients during the final week of life, chart reviews were conducted to record all opioid medications administered in the last week of life to 877 adult inpatients who died from natural causes between January 1, 1997 and December 31, 1999. Inpatient morphine use did not increase significantly for dying patients from 1997 to 1999. However, overall morphine use for both Oregon and the United States as measured by ARCOS data increased significantly. Comparisons revealed no significant difference between linear trends for Oregon and U.S. morphine use, but both were significantly greater than the dying inpatients. This pattern was also found for all other opioids. These findings suggest that ARCOS data do not necessarily provide information about opioid use for specific subpopulations of patients and raise questions about the meaning of observed increases in ARCOS data.

Analgesics, Opioid↗
PubMed2004

Out-of-hospital death: advance care planning, decedent symptoms, and caregiver burden.

OBJECTIVES: To examine the end-of-life experiences of elderly decedents dying out of the hospital and their family caregivers in a state in which the vast majority of Medicare deaths occur in community settings. DESIGN: Telephone survey of family caregivers 2 to 5 months after decedents' deaths. SETTING: Statewide (Oregon) random sample of death certificates. PARTICIPANTS: One thousand one hundred eighty-nine family caregivers of decedents aged 65 and older who died of natural deaths in community settings between 2000 and 2002. MEASUREMENTS: A 69-item telephone questionnaire with single-item indicators and embedded scales that indexed advance directives, use of life-sustaining treatments, hospice enrollment, decedent symptom experience and perceived distress, family financial hardship, out-of-pocket expenses, and caregiver strain. RESULTS: Most decedents had advance directives (78.3%) and were enrolled in hospice (62.4%). Although perceived decedent symptom distress was low overall, certain symptoms (e.g., pain, dyspnea, constipation) were distressing for approximately half of decedents experiencing them. Financial hardship, out-of-pocket expenses, and caregiver strain were frequently reported. American Indian race and younger age were associated with decedent symptom distress. Greater perceived decedent symptom distress, hospice enrollment, more caregiver involvement, and more financial burden were associated with greater caregiver strain. CONCLUSION: Despite high rates of advance directives and hospice enrollment, perceived symptom distress was high for a subset of decedents, and caregiver strain was common. As location of death increasingly shifts nationwide from hospital to community, unmet decedent and family needs require new clinical skills and healthcare policies.

Advance Care Planning↗
PubMed2004

Use of the Physician Orders for Life-Sustaining Treatment program in Oregon nursing facilities: beyond resuscitation status.

OBJECTIVES: Program was designed to communicate resident/surrogate treatment preferences in the form of medical orders. To assess statewide nursing facility use of the Physician Orders for Life-Sustaining Treatment (POLST) and to identify the patterns of orders documented on residents' POLST forms. DESIGN: Telephone survey; on-site POLST form review. SETTING: Oregon nursing facilities. PARTICIPANTS: One hundred forty-six nursing facilities in the telephone survey; 356 nursing facility residents aged 65 and older at seven nursing facilities in the POLST form review. MEASUREMENTS: A telephone survey; onsite POLST form reviews. RESULTS: In the telephone survey, 71% of facilities reported using the POLST program for at least half of their residents. In the POLST form review, do-not-resuscitate (DNR) orders were present on 88% of POLST forms. On forms indicating DNR, 77% reflected preferences for more than the lowest level of treatment in at least one other category. On POLST forms indicating orders to resuscitate, 47% reflected preferences for less than the highest level of treatment in at least one other category. The oldest old (> or = 85, n=167) were more likely than the young old (65-74, n=48) to have orders to limit resuscitation, medical treatment, and artificial nutrition and hydration. CONCLUSION: The POLST program is widely used in Oregon nursing facilities. A majority of individuals with DNR orders requested some other form of life-extending treatment, and advanced age was associated with orders to limit treatments.

Advance Care Planning↗
PubMed2004

The Physician Orders for Life-Sustaining Treatment program: Oregon emergency medical technicians' practical experiences and attitudes.

OBJECTIVES: To evaluate emergency medical technicians' (EMTs) experiences with the Physician Orders for Life-Sustaining Treatment (POLST) program and learn about attitudes regarding its effectiveness. DESIGN: Anonymous survey mailed to a stratified random sample. SETTING: Tri-County Portland, Oregon, area. PARTICIPANTS: A total of 572 Oregon EMT respondents (out of 1,048 surveys) were included in the analysis. MEASUREMENTS: Survey questions about experiences with the POLST form and opinions about POLST. RESULTS: Respondents were mostly male (76%) and paramedics (66%). Most respondents (73%) had treated a patient with a POLST, and 74% reported receiving education about POLST. EMTs reported that POLST, when present, changed treatment in 45% of cases. Seventy-five percent of the respondents agreed that the POLST form provides clear instructions about patient preferences, and 93% agreed that the POLST form is useful in determining which treatments to provide when the patient is in cardiopulmonary arrest. Fewer (63%) agreed that the form is useful in determining treatments when the patient has a pulse and is breathing. CONCLUSION: Most respondents have experience with the POLST program. EMTs find the POLST form useful and often use it to change treatment decisions for patients.

Advance Care Planning↗
PubMed2004

Family perceptions of worry, symptoms, and suffering in the dying.

In this exploratory study, family members of 63 decedents were interviewed by telephone, two to five months post-death, about their perceptions of their loved one's worries, symptoms, and suffering at the end of life. The most common worries reported focused on loss of bodily function (44%), being dependent (40%), and being a burden (39%). Distressing physical and psychological symptoms were reported. A majority (94%) of family members reported that their loved one suffered at the end of life, but only worries about loss of quality of life (e.g., being unable to participate in enjoyable activities) were predictive of reports of suffering. Findings suggest that worries, irrespective of the level of current symptoms, play an important role in the suffering of dying patients, and that treatment plans for the terminally ill should routinely explore both symptoms and worries.

Activities of Daily Living↗
PubMed2003

Life support withdrawal: communication and conflict.

BACKGROUND: Skillful communication between and among clinicians and patients' families at the patients' end of life is essential for decision making. Yet communication can be particularly difficult during stressful situations such as when a family member is critically ill. This is especially the case when families are faced with choices about forgoing life-sustaining treatment. OBJECTIVES: Data from a larger study on treatment withdrawal (n = 74) indicated that the family members (n = 20) of some patients experienced conflict with clinicians during decision making. This secondary analysis was done to examine and describe the communication difficulties from the perspectives of patients' family members who experienced conflict with clinicians about the care and treatment of the patients during withdrawal of life support. METHODS: A qualitative descriptive analysis of family members (n = 20, representing 12 decedents) who experienced conflict. RESULTS: Families described several unmet communication needs during the often rapid shift from aggressive treatment to palliative care. These needs included the need for timely information, the need for honesty, the need for clinicians to be clear, the need for clinicians to be informed, and the need for clinicians to listen. CONCLUSIONS: Although family members who experienced conflict were in the minority of the larger study sample, their concerns and needs are important for clinicians to examine. Paying careful attention to these communication needs could reduce the occurrence of conflict between clinicians and patients' families in caring for dying patients and reduce stress for all involved.

Adult↗
PubMed2002

Responding to requests for physician-assisted suicide: "These are uncharted waters for both of us...".

Studies of dying patients have shown that about half would like the option of physician-assisted suicide (PAS) to be available for possible future use. Those percentages decrease significantly with each step patients take toward action. Studies show that although about 10% of patients seriously consider PAS, only 1% of dying patients specifically request it, and 1 in 10 of those patients actually receive and take a lethal prescription. However, most patients' desires for PAS diminish as their underlying concerns are identified and addressed directly. To help identify concerns motivating a patient's request for PAS, physicians should talk with patients about their expectations and fears, options for end-of-life care, goals, family concerns and burdens, suffering or physical symptoms, sense of meaning and quality of life, and symptoms of depression. A patient with advanced amyotrophic lateral sclerosis (ALS) who requested PAS illustrates how a hasty response may adversely affect patient care and the health care team. Although physicians should remain mindful of their personal, moral, and legal concerns, these concerns should not override their willingness to explore what motivates a patient to make this request. When this approach is taken, suffering can be optimally alleviated and, in almost all cases, the patient's wishes can be met without PAS.

Advance Directives↗
PubMed2002

Factors associated with lower rates of in-hospital death.

OBJECTIVES: Examine individual and statewide factors associated with hospital as location of death. DESIGN: An observational study using large national databases. PARTICIPANTS: All 1997 U.S. decedents (all ages, all causes.) RESULTS: The West has the lowest percentage of deaths occurring in an acute care hospital, and the highest percentage of deaths at home. Increased hospital bed availability is significantly associated with greater chance of dying in an acute care hospital. Hispanic, nonwhite, and less educated decedents are more likely to die in a hospital (as opposed to home or nursing home). CONCLUSIONS: Hospital bed availability profoundly influences the likelihood of dying in a hospital. Individual characteristics such as race and education affect location of death as well. These three factors account for approximately 75% of the trend in the West to a lower in-hospital death rate and more deaths at home. Additional factors may include formal out of hospital orders to limit transfer.

Aged↗
PubMed2002

Changing end-of-life planning: the Oregon experience.

Large state-by-state variations exist in location of dying and level of aggressive treatment during the final phase of life. This paper describes Oregon's incremental gains toward improving advance planning for end-of-life care in a state with the lowest rate of in-hospital deaths. Action strategies have required data gathering and reporting, and coalition building with a focus on systems change. Also, public education through the news media has proved to be a vital component of Oregon's process of change. The impact of media coverage is complemented by continuing education for health professionals. Special efforts are still needed to improve access to the Physician's Orders for Life-Sustaining Treatment program (POLST) for some rural, minority, and pediatric populations and for persons living at home with a diagnosis other than cancer. However, with enough time, a sustained effort, and a broad coalition of partners, profound change is possible.

Advance Directives↗
PubMedDate not supplied

Sampling challenges in end-of-life research: case-finding for family informants.

BACKGROUND: Research on end-of-life care is hampered by challenges in accessing appropriate subjects for data collection. Although families of decedents are rich sources of research data, they are underutilized, most likely due to the access difficulties they present to investigators. OBJECTIVES: To describe case-finding strategies that can achieve a large and representative sample of family informants for research studies about end-of-life care. METHODS: Case-finding strategies were developed and honed over the course o fthree epidemiological studies on end-of-life care. Family location information was culled from death certificates and a combination of public and commercial sources. RESULTS: The researchers generated large random samples of study-eligible decedents and, using the case-finding strategies described, recruited family members of decedents as informants. By the third study, two-thirds of family members were located and interviewed within the narrow time frame of 2-5 months following the death of their loved one. DISCUSSION: Epidemiological studies on end-of-life, using large random samples of decedents and their family members, are feasible when armed with an array of effective case finding strategies.

Data Collection↗