In this issue of JAMA, Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment” and 1162 had orders for either “limited additional interventions” (761 [42%]) or “comfort measures only” (401 [22%]). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
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Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions (“comfort measures only” vs “limited additional interventions” vs “full treatment”), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Background: There is no evidence on effectiveness of Advance care planning (ACP) among heart failure (HF) patients. We examined the effect of an ACP program in facilitating EOL care consistent with HF patients’ preferences (primary aim), and on their decisional conflict, discussion with surrogates, illness understanding, anxiety, depression and quality of life (secondary aims).
Methods: We randomized 282 HF patients to receive ACP (n=93) or usual care (control arm, n=189). Primary outcomes were assessed among deceased (n=89) and secondary outcomes from baseline and 6 follow-ups conducted every 4 months.
Results: Deceased patients in ACP arm were no more likely than those in control arm to have wishes followed for EOL treatments (ACP: 35%, Control: 44%; p=0.47), or place of death (ACP: 52%, Control: 51%; p-value=1.00). A higher proportion in ACP arm had wishes followed for cardiopulmonary resuscitation (ACP: 83%, Control: 62%; p=0.12). At first follow-up, ACP patients had lower decisional conflict (ß=-10.8, p <0.01) and were more likely to discuss preferences with surrogates (ß=1.3, p=0.04). ACP did not influence other outcomes.
Conclusion: This trial did not confirm that our ACP program was effective in facilitating EOL care consistent with their preferences. The program led to short-term improvements in the decision-making.
BACKGROUND: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes.
OBJECTIVE: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice.
DESIGN: Qualitative case study, using in-depth interviews and constant comparative method.
SETTING/PATIENTS: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background.
MEASUREMENTS: Themes identified in qualitative in-depth interviews.
RESULTS: Patients rarely refused hospice outright but more often postponed using a "soft no," in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care.
CONCLUSIONS: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.
BACKGROUND: Metastatic breast cancer (MBC) is generally incurable, but patients can survive longer than those with other cancer types. Treatment strategies for MBC are complex, and it is difficult to establish evidence of efficacy since symptoms and patient backgrounds vary markedly. Some patients struggle to decide where to receive end-of-life care, despite palliative care intervention, and some die in unexpected places. With the aim of ascertaining the best way to intervene on behalf of patients with end-stage breast cancer, we retrospectively examined interventions provided by our palliative care team. We investigated factors influencing the decision-making processes of patients with MBC regarding end-of-life care locations and where patients actually died.
METHODS: Clinical records of 44 patients with MBC, all Japanese women, who received palliative care interventions at our hospital, were retrospectively investigated. We examined factors, such as age, possibly impacting decision-making processes regarding the final location and actual place of death.
RESULTS: Thirty-five (80%) patients were able to decide where to receive end-of-life care, while the others were not. For these 35 patients, desired locations were the palliative care unit (77%), home palliative care (14%), and the hospital (9%). Age and recurrence-free survival (RFS) were factors influencing patients' decision-making processes (P = .030 and .044, respectively). Of the 35 patients, 25 (71%) were able to receive end-of-life care at their desired locations.
CONCLUSIONS: Young patients and those with short RFS struggled with making decisions regarding where to receive end-of-life care. Such patients might benefit from prompt introduction of advanced care planning.
We consider uncertainty in relation to clinical trials for terminal non-small cell lung cancer, which is an aggressive and difficult to treat form of cancer. Using grounded theory to analyse 85 clinical interactions between doctors, patients and family members, we argue that uncertainty is a major source of tension for terminally ill patients, with individuals confronting a choice between transitioning to palliative care or volunteering for an experimental/trial medication that might postpone death. Regardless of their efficacy, patients must also consider how such experimental treatments might impact their quality-of-life. We argue that clinical trials produce uncertainty through (i) discussions about the efficacy of clinical trials; (ii) the physiological consequences of clinical trial medications; and (iii) the impact clinical trials have on patient's prognostic understanding of their terminal cancer. Accordingly, while study participants encounter high prognostic certainty (i.e. they have a fatal cancer), they nonetheless experience considerable uncertainty in relation to their participation in clinical trials.
To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.
Purpose: Patients with advanced cancer often receive suboptimal end-of-life (EOL) care. Particularly males with advanced cancer are more likely to receive EOL care that is more aggressive, even if death is imminent. Critical factors determining EOL care are EOL conversations or advance care planning. However, information about gender-related factors influencing EOL conversations is lacking. Therefore, the current study investigates gender differences concerning the content, the desired time point, and the mode of initiation of EOL conversations in cancer patients.
Methods: In a cross-sectional study, 186 female and male cancer patients were asked about their preferences for EOL discussions using a semi-structured interview, focusing on (a) the importance of six different topics (medical and nursing care, organizational, emotional, social, and spiritual/religious aspects), (b) the desired time point, and (c) the mode of discussion initiation.
Results: The importance of EOL topics differs significantly regarding issue (p = 0.002, 2 = 0.02) and gender (p < 0.001, 2 = 0.11). Males wish to avoid the engagement in discussions about death and dying particularly if they are anxious about their end-of-life period. They wish to be addressed regarding the “hard facts” nursing and medical care only. In contrast, females prefer to speak more about “soft facts” and to be addressed about each EOL topic. Independent of gender, the majority of patients prefer to talk rather late: when the disease is getting worse (58%), at the end of their therapy, or when loosing self-sufficiency (27.5%).
Conclusion: The tendency of patients to talk late about EOL issues increases the risk of delayed or missed EOL conversations, which may be due to a knowledge gap regarding the possibility of disease-associated incapability. Furthermore, there are significant gender differences influencing the access to EOL conversations. Therefore, for daily clinical routine, we suggest an early two-step, gender-sensitive approach to end-of-life conversations.
BACKGROUND: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled.
OBJECTIVE: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities.
DESIGN/PARTICIPANTS: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation.
MEASUREMENTS/RESULTS: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were "Live as long as possible," "Be mentally aware," "Provide support for family," "Be independent," and "Be at peace." Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with "hospice" and "palliative care" most frequently documented. Five of 18 patients had documentation about their goals.
CONCLUSION: Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.
BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important.
AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care.
METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test.
RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation.
CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
BACKGROUND: While patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient's preferences towards prognosis medical information are unclear. Valid tools to explore patients' preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer.
METHODS: The psychometric properties of the API translated into French were assessed among patients consecutively recruited from January to March 2017 in the waiting rooms of 19 general practitioners (N = 391) and in an oncology (N = 187) clinic in Paris. Relationships between the newly-developed items and the API subscale scores were studied.
RESULTS: A three correlated factors confirmatory model (two factors related to decision-making and a factor related to information-seeking preferences) showed an acceptable fit on the whole sample and no measurement invariance issue was found across settings, age, sex and educational level. Internal consistency and test-retest reliability were acceptable for the information-seeking and decision-making subscales. One of the newly-developed items on patients' ability to anticipate a decision on the use of artificial respiration if a sudden deterioration of their illness occurred was not related to the API subscale scores.
CONCLUSION: The French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.
BACKGROUND: High-quality shared decision-making for patients undergoing elective surgical procedures includes eliciting patient goals and treatment preferences. This is particularly important, should complications occur and life-sustaining therapies be considered. Our objective was to determine the preoperative care preferences of older higher-risk patients undergoing elective procedures and to determine any factors associated with a preference for limitations to life-sustaining treatments.
METHODS: Cross-sectional survey conducted between May and December 2018. Patients =55 years of age presenting for a preprocedural evaluation in a high-risk anesthesia clinic were queried on their desire for life-sustaining treatments (cardiopulmonary resuscitation, mechanical ventilation, dialysis, and artificial nutrition) as well as tolerance for declines in health states (physical disability, cognitive disability, and daily severe pain).
RESULTS: One hundred patients completed the survey. The median patient age was 68. Most patients were Caucasian (87%) and had an American Society of Anesthesiologists (ASA) score of III (88%). The majority of patients (89%) desired cardiopulmonary resuscitation. However, most patients would not accept mechanical ventilation, dialysis, or artificial nutrition for an indefinite period of time. Similarly, most patients (67%–81%) indicated they would not desire treatments to sustain life in the event of permanent physical disability, cognitive disability, or daily severe pain.
CONCLUSIONS: Among older, higher-risk patients presenting for elective procedures, most patients chose limitations to life-sustaining treatments. This work highlights the need for an in-depth goals of care discussion and establishment of advance care preferences before a procedure or operative intervention.
Objectives: To identify patient perceptions of how and when palliative care (PC) could complement usual heart failure (HF) management.
Background: Despite guidelines calling for the integration of PC into the management of HF, PC services remain underutilized by this population. Patient preferences regarding delivery of and triggers for PC are unknown.
Setting/subjects: Individuals with New York Heart Association Class II-IV disease were recruited from inpatient and outpatient settings at an academic quaternary care hospital.
Measurements: Participants completed semistructured interviews discussing perceptions, knowledge, and preferences regarding PC. They also addressed barriers and facilitators to PC delivery. Two investigators independently analyzed data using template analysis.
Results: We interviewed 27 adults with HF (mean age 63, 85% white, 63% male, 30% Class II, 48% Class III, and 22% Class IV). Participants frequently conflated PC with hospice; once corrected, they expressed variable preferences for primary versus specialist services. Proponents of primary PC cited continuity in care, HF-specific expertise, convenience, and cost, whereas advocates for specialist care highlighted expertise in symptom management and caregiver support, reduced time constraints, and a comprehensive approach to care. Triggers for specialist PC focused on late-stage manifestations of disease such as loss of independence and absence of disease-directed therapies.
Conclusions: Patients with HF demonstrated variable conceptions of PC and its relevance to their disease management. Although preferences for delivery model were based on a variety of logistical and relational factors, triggers for initiation remained focused on late-stage disease, suggesting that patients with HF may misconceive PC is an option of last resort.
OBJECTIVES: To assess knowledge and attitudes about do not resuscitate (DNR) among patients and their relatives visiting outpatient clinics at King Abdulaziz University Hospital (KAUH), Jeddah, Kingdom of Saudi Arabia.
METHODS: A cross-sectional study conducted between March and April 2018 with a self-administered questionnaire among patients and their relatives visiting outpatient clinics at KAUH. A systematic random selection of individuals every other day.
RESULTS: The questionnaire was filled by 400 participants. Fifty-four percent were patients' relatives, and approximately 60% were female. Out of 105 (26.3%) who were familiar with DNR term, 44.8% chose the correct definition, 5.2% had previous experience with the DNR term, and 34.3% of them had DNR-related knowledge from social media. Out of the 400 participants, 169 (42.3%) disagreed with DNR. The majority of responders did not know if there is DNR policy or fatwa (a legal opinion on the point of Islamic law).
CONCLUSION: There is a lack of knowledge regarding DNR among participants.
BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.
OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care.
METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for?
DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood.
Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic.
Design: Cross-sectional survey study.
Setting/Subjects : Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center.
Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay.
Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.
METHODS: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.
RESULTS: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.
CONCLUSIONS: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.
Background: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.
Methods: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.
Results: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).
Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.
Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.