scholarly journals Feasibility of Educating Stem Cell Transplant Patients on Advance Care Planning: A Pilot Study

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4798-4798
Author(s):  
Kuldeep N Yadav ◽  
Lon T Ogunduyile ◽  
Brain Bayes ◽  
Elizabeth Cooney ◽  
Alison W. Loren ◽  
...  
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Advance Care Planning ◽  
Educational Intervention ◽  
Hematologic Malignancies ◽  
Decisional Conflict ◽  
Care Planning ◽  
Advance Care ◽  
To Receive

Abstract Introduction Patients with hematologic malignancies undergoing hematopoietic cell transplants (HCT) experience a high symptom burden, suffer from diminished quality of life, and often receive aggressive care at the end of life. Low completion rates of advance directives (ADs) regarding preferences for end-of-life care in this population are also common. Our study aims to examine the feasibility of a timely educational intervention about an online AD (i.e., OurCareWishes.org; OCW) for patients with hematologic malignancies undergoing autologous or allogeneic stem cell transplantation. We also seek to ascertain whether this educational intervention impacts patients' decisional conflict regarding transplant and quality of life. Methods Patients scheduled for HCT were recruited and randomized to receive either in-person guided education about OCW (i.e., intervention) or standard AD information (i.e., usual care) 3-4 weeks prior to hospital admission for transplantation. Patients receiving the educational intervention were offered the opportunity to specify their preferences for life-sustaining or comfort-oriented care using vignettes and ultimately complete two components of online AD (e.g., health care proxy and living will). All patients received in-person follow-ups during their transplant and 2 months post-transplant appointments, during which patients who had received the educational intervention were re-approached about completing the online AD. Patients indicating a previously completed AD were offered the opportunity to review. At all three time points, patients were surveyed on their (1) decisional conflict regarding transplant using Decision Conflict Scale (DCS, 16-item, Range 0-60) and their (2) overall quality of life using McGill Quality of Life (MQoL) scale (16-item, Range 1-7). Greater DCS and MQoL scores represent greater decision conflict and better quality of life, respectively. We conducted a one-way repeated measures ANOVA to examine the effect of the educational AD intervention on decisional outcomes and quality of life. Results A total of 96 patients (98% Recruitment Rate) consented to participate and were randomized to receive either OCW (n=47) or standard AD information (n=49). They underwent either autologous (n=29), allogeneic reduced intensity (n=29), or allogeneic myeloablative (n=38) HCT. Most patients were male (n=57; 61%) and White (n=85; 89%). The median age was 59 (IQR=49.5-65.5) years (Table 1). There were no differences between intervention and usual care groups in their rating for overall quality of life and decisional conflict at all three timepoints (all p>0.05). 48% of patients (n=49) self-reported to have completed an AD prior this study, but only 43% (n=21) had a current AD uploaded to the EHR. Moreover, less than 6% of patients who received the OCW intervention fully completed the online AD. Conclusions This pilot study demonstrated the feasibility of administering a brief educational intervention on advance care planning (ACP) in patients with hematologic malignancies preparing for HCT. Participants in this study were generally receptive to discussions about advance care planning, even when presented by non-clinical staff. Education about advance directives does not appear to negatively affect decisional outcomes or quality of life. Nonetheless, further research should focus on how to increase AD completion rates, possibly through multidisciplinary team engagement in serious illness conversations and coordinated physician/patient incentives. Future studies should examine the impact of education of AD on aggressiveness of care and end-of-life outcomes in patients undergoing HCT. Disclosures No relevant conflicts of interest to declare.

Making Advance Directives Visual: Introducing Young Adults to Advance Care Planning With Video-Recorded Advance Directives

2019 ◽  
Vol 25 (4) ◽  
pp. e44-e51
Author(s):  
Cameron Kiersch ◽  
Teddie Potter
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Planning Process ◽  
Care Planning ◽  
Advance Care ◽  
Definition Of

The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.

Outcomes Associated with End-of-Life Discussions (DRAFT)

2018 ◽  
Author(s):  
Masanori Mori
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Aggressive Care

Physicians and advanced cancer patients are often reluctant to talk about death. They frequently avoid end-of-life discussions (EOLds), although such conversations are essential to initiate advance care planning. In this prospective, a longitudinal multisite cohort study of advanced cancer patients and their informal caregivers, the authors suggested cascading benefits of EOLds between patients and their physicians. In total, 123 of 332 (37.0%) patients reported having EOLds with their physicians at baseline. EOLds were not associated with higher rates of emotional distress or psychiatric disorders. Instead, after propensity-score weighted adjustment, EOLds were associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care was associated with worse patient quality of life and worse bereavement adjustment. These findings may help destigmatize EOLds and assist physicians and patients in initiating such conversations and engaging in advance care planning.

A population-based approach to end of life care and advance care planning

2018 ◽  
Author(s):  
Muir Gray ◽  
Rammya Matthews ◽  
Keri Thomas
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Population Based ◽  
Care Planning ◽  
Life Care ◽  
The People ◽  
Advance Care

A population-based approach takes account of the needs of the people within a given population. A key aspect of this is reducing unwarranted variation and addressing both the underuse of high-value interventions and the overuse of low-value interventions. In the context of end-of-life care, high-value interventions are those that enhance quality of life. In contrast, low-value interventions are those that are futile, those that negatively impact on quality of life, and those that are not in line with the person’s wishes. Advance care planning (ACP) is a means by which a person can document their choices at the end of life; it supports person-centred care and also facilitates the redistribution of investment from low-value to high-value interventions.

Advance Care Planning

2016 ◽  
Vol 34 (1) ◽  
pp. 26-33 ◽  
Author(s):  
Laurence Tan ◽  
Lai Kiow Sim ◽  
Lynnette Ng ◽  
Hui Jin Toh ◽  
James Alvin Low
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Advance Care Planning ◽  
Treatment Options ◽  
Group Discussion ◽  
Spiritual Needs ◽  
Care Planning ◽  
Spiritual Community ◽  
Advance Care

There has been a growing trend in addressing spiritual needs in caring for the person, especially nearing the end of one’s life. Advance care planning (ACP) facilitates understanding of preferences and explores the spiritual and existential aspects of care. This study explores the views and preferences of a group of Catholic nuns in Singapore, specifically looking at what was meaningful and valuable to them when determining treatment options at the end of life. Twenty-three nuns were purposively recruited in July 2012. A focus group discussion was conducted after administration of a questionnaire and attendance at a 1-hour talk on ACP. Slightly more than half had heard of ACP prior to the talk. The majority agreed that ACP was not against their religious beliefs” and that quality of life was important to them. The themes that emerged from this study were autonomy and freedom, spirituality and quality of life, and the meaning of ACP. The findings of this study suggested that spirituality and faith define the way the participants lived their lives, including their views and preferences on end-of-life care. Integrating spirituality into an essential domain of care will help the spiritual community honor a crucial part of end-of-life discussions and afford a greater discernment of the deep meaning that ACP holds.

scholarly journals Current Practice of Dutch Hospital-Based Palliative Care Teams: Advance Care Planning in Advanced Stages of Disease

2021 ◽  
Author(s):  
Iris Doorne ◽  
Dick L. Willems ◽  
Nadine Baks ◽  
Jelle Kuijper ◽  
Bianca. M. Buurman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Northwestern Part ◽  
Care Planning ◽  
Dutch Hospital ◽  
Palliative Care Teams ◽  
Advance Care

Abstract Background: Specialist palliative care teams (PCT) are consulted during hospital admission for advice on complex palliative care. These consultations need to be timely to prevent symptom burden and maintain quality of life. Insight into specialist PCTs may help improve the outcomes of palliative care. Methods: In this retrospective observational study, we analyzed qualitative and quantitative data of palliative care consultations in a six-month period in four general hospitals in the northwestern part of the Netherlands. Data were obtained from electronic medical records. Results: We extracted data from 336 consultations. The most common diagnoses were cancer (54.8%) and organ failure (26.8%). 40.2% of patients were restricted to a chair or bed and 52.3% had an estimated life expectancy of less than three months. Within two weeks after consultation, 53.2% of the patients died, and the median time until death was 11 days (range 191) after consultation. Most patients died in hospital (49.4%) but only 7.5% preferred to die in hospital. Consultations were mostly requested for advance care planning (31.6%). End-of-life preferences focused on last wishes and maintaining quality of life. Conclusion: This study shows that palliative care consultations focus on terminal care and are more crisis-oriented than prevention-oriented. Death often occurs too quickly after consultation for end-of-life preferences to be met and these preferences tend to focus on dying. Educating healthcare professionals on when to initiate palliative care would promote a more prevention-oriented approach. Factors that indicate the need for timely PCT consultation should be defined.

Attitudes of Patients With Incurable Cancer Toward Medical Treatment in the Last Phase of Life

2005 ◽  
Vol 23 (9) ◽  
pp. 2012-2019 ◽  
Author(s):  
Elsbeth Voogt ◽  
Agnes van der Heide ◽  
Judith A.C. Rietjens ◽  
Anna F. van Leeuwen ◽  
Adriaan P. Visser ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Incurable Cancer ◽  
History Of ◽  
Advance Care ◽  
Positive Feelings ◽  
End Of Life Decision ◽  
History Of Cancer

Purpose When cancer has advanced to a stage in which cure becomes unlikely, patients may have to consider the aim of further treatment. We studied the relationship of patients' attitudes toward treatment with advance care planning and the development of these attitudes after diagnosis of incurable cancer. Patients and Methods Patients with incurable cancer were interviewed and asked to fill out a written questionnaire about their attitudes concerning life-prolonging treatment and end-of-life decision making. These questions were repeated after 6 and 12 months. Results One hundred twenty-two patients (mean age, 64 years; standard deviation, 10.5 years; 53% women) participated in the study. Patients' attitudes toward treatment could be categorized into the following three different profiles: striving for quality of life, striving for length of life, and no clear preference. Patients who were older, more tired, or had less positive feelings and patients who had more often taken initiatives to engage in advance care planning were more inclined to strive for quality of life than others. Patients with a history of cancer of less than 6 months were more inclined to prefer life prolongation than patients with a longer history of cancer. During follow-up, no changes in attitudes toward treatment were found, except for patients with a short history of cancer in whom the inclination to strive for length decreased. Conclusion Patients who appreciate advance care planning were more inclined to strive for quality of life than other patients. Shortly after the diagnosis of cancer, patients typically seem to prefer life-prolonging treatment, whereas quality of life becomes more important when death is nearing.

scholarly journals The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis

2019 ◽  
Vol 35 (3) ◽  
pp. 874-884 ◽  
Author(s):  
Markus Schichtel ◽  
Bee Wee ◽  
Rafael Perera ◽  
Igho Onakpoya
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Meta Analysis ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract Background Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs). Methods We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method. Results Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients’ satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient’s disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP. Conclusions ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.

scholarly journals Advance Care Planning and End-Of-Life Communications: Practical Tips for Oncology Advanced Practitioners

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Poonam Goswami, DNP, FNP-C, AOCNP
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Aggressive Treatment ◽  
Advanced Practitioner ◽  
Advance Care ◽  
Patients Wishes

Advance care planning discussions ensure patients’ values and goals of care, including the freedom to choose their place of death, are respected. The benefits of advance care planning and early end-of-life care discussions are often delayed, as these discussions are not initiated early in patients’ cancer trajectories. As a result, patients’ wishes often remain unknown until the last phase of their life. Evidence suggests that many patients inappropriately receive aggressive treatment near the end of life, which leads to higher resource utilization, decreased quality of life, and increased cost. The purpose of this article is to provide practical tips to the oncology advanced practitioner on initiating advance care planning and end-of-life care discussions with patients and their families or caregivers.

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

The effectiveness of a modified advance care planning programme

2020 ◽  
Vol 27 (7) ◽  
pp. 1569-1586
Author(s):  
Renli Deng ◽  
Jianghui Zhang ◽  
Liuliu Chen ◽  
Jiarui Miao ◽  
Jiazhong Duan ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Frail Older People ◽  
Advance Care ◽  
Planning Intervention

Background: Frailty is a natural consequence of the aging process. With the increasing aging population in Mainland China, the quality of life and end-of-life care for frail older people need to be taken into consideration. Advance Care Planning has also been used worldwide in long-term facilities, hospitals and communities to improve the quality of end-of-life care, increase patient and family satisfaction, and reduce healthcare costs and hospital admissions in Western countries. However, it has not been practiced in China. Research objective: This study aimed to evaluate the effectiveness of a modified Advance Care Planning intervention in certainty of end-of-life care, preferences for end-of-life care, quality of life concerns, and healthcare utilization among frail older people. Research design: This study used a quasi-experimental design, with a single-blind, control group, pretest and repeated posttest approach. Participants and research context: A convenience sample of 74 participates met the eligibility criteria in each nursing home. A total of 148 frail older people were recruited in two nursing homes in Zhejiang Province, China. Ethical considerations: The study received ethical approval from the Clinical Research Ethics Committee, the Faculty of Medicine, and The Chinese University of Hong Kong, CREC Ref. No: 2016.059. Findings: The results indicated the Advance Care Planning programme was effective at increasing autonomy in decision making on end-of-life care issues, decreasing decision-making conflicts over end-of-life care issues, and increasing their expression about end-of-life care. Discussion: This study promoted the participants’ autonomy and broke through the inherent custom of avoiding talking about death in China. Conclusion: The modified Advance Care Planning intervention is effective and recommended to support the frail older people in their end-of-life care decision in Chinese society.

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