Original Articles
Exploring family relationships through associations of comfort, relatedness states, and life closure in hospice patients: A pilot study
- Dana M. Hansen, Patricia A. Higgins, Camille Beckette Warner, M. Murray Mayo
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- Published online by Cambridge University Press:
- 24 April 2014, pp. 305-311
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Objective:
Research at the end of life tends to focus on the dying patient's symptoms, often overlooking issues associated with family interactions. However, many families struggle just to maintain or initiate these valuable connections. The purpose of our pilot study was to explore family relationships at the end of life and investigate associations among perceived comfort, relatedness states, and life closure.
Method:This descriptive study used a cross-sectional design, and a convenience sample (n = 30; 18 women; mean age = 71 years) was recruited from patients admitted to a large not-for-profit hospice in northeastern Ohio. In-person interviews using the Hospice Comfort Questionnaire, Relatedness States Visual Analog Scales, and the Life-Closure Scale provided data for analyses.
Results:Family interactions that were not associated with the physical tasks of caregiving were related to life closure (r = 0.36, p = 0.001), and life closure and comfort were highly correlated (r = 0.69, p < 0.001). Participants residing in an inpatient setting had higher levels of involvement (t[18] = –2.07, p = 0.05) and comfort in relationships (t[28] = –2.06, p = 0.05) than those in the home setting.
Significance of Results:This is the first known study investigating the associations among comfort, relatedness, and life closure at the end of life. The majority of participants had high levels of involvement and comfort in their relationships, and they preferred interactions that required minimal effort. Studies that focus on both patients' and family members' perceptions of relationships are needed as well as outcome studies that test simple interventions.
Legalizing physician-assisted suicide and/or euthanasia: Pragmatic implications
- Peter Hudson, Rosalie Hudson, Jennifer Philip, Mark Boughey, Brian Kelly, Cees Hertogh
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- Published online by Cambridge University Press:
- 11 February 2015, pp. 1399-1409
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Objective:
Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated—particularly around ethical and legal issues—and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.
Method:We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.
Results:We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.
Significance of Results:Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.
Spiritual distress of military veterans at the end of life
- Bei-Hung Chang, Nathan R Stein, Lara M Skarf
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- 28 April 2014, pp. 635-639
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Objective:
Although combat experiences can have a profound impact on individuals' spirituality, there is a dearth of research in this area. Our recent study indicates that one unique spiritual need of veterans who are at the end of life is to resolve distress caused by combat-related events that conflict with their personal beliefs. This study sought to gain an understanding of chaplains' perspectives on this type of spiritual need, as well as the spiritual care that chaplains provide to help veterans ease this distress.
Method:We individually interviewed five chaplains who have provided spiritual care to veterans at the end of life in a Veterans Administration hospital. The interviews were recorded, transcribed, and analyzed based on “grounded theory.”
Results:Chaplains reported that they frequently encounter veterans at the end of life who are still suffering from thoughts or images of events that occurred during their military career. Although some veterans are hesitant to discuss their experiences, chaplains reported that they have had some success with helping the veterans to open up. Additionally, chaplains reported using both religious (e.g., confessing sins) and nonreligious approaches (e.g., recording military experience) to help veterans to heal.
Significance of results:Our pilot study provides some insight into the spiritual distress that many military veterans may be experiencing, as well as methods that a chaplain can employ to help these veterans. Further studies are needed to confirm our findings and to examine the value of integrating the chaplain service into mental health care for veterans.
Palliative care in children with spinal muscular atrophy type I: What do they need?
- Alberto García-Salido, María García de Paso-Mora, Manuel Monleón-Luque, Ricardo Martino-Alba
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- 24 February 2014, pp. 313-317
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Objective:
Our aim was to describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program.
Method:We undertook a retrospective chart review of nine consecutive patients. Descriptions of the clinical and demographic profile of children with spinal muscular atrophy (SMA) type I were referred to a pediatric palliative care team (PPCT).
Results:Six males and three females were admitted to the PPCT, all before six months of age, except for one afflicted with SMA type I with respiratory distress. The median time of attention was 57 days (range 1–150). The domiciliary attention mainly consisted of respiratory care. The patient with SMA type I with respiratory distress required domiciliary mechanical ventilation by tracheotomy. In all cases, a nasogastric tube (NT) was indicated. As end-of-life care, eight required morphine to manage the dyspnea, four received it only by enteral (oral or NT) administration, and four received it first by enteral administration with continuous subcutaneous infusion (CSI) later. Three of the four patients with CSI also received benzodiazepines. While they were attended by the PPCT, none required hospital admission. All the patients died at home except for the one attended to for just one day.
Significance of Results:Domiciliary care for these patients is possible. The respiratory morbidity and its management are the main issues. Application of an NT is useful to maintain nutritional balance. Morphine administration is necessary to manage the dyspnea. Palliative sedation is not always necessary.
Development of a brief measure of generativity and ego-integrity for use in palliative care settings
- Dean Vuksanovic, Murray Dyck, Heather Green
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- Published online by Cambridge University Press:
- 12 February 2015, pp. 1411-1415
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Objective:
Our aim was to develop and test a brief measure of generativity and ego-integrity that is suitable for use in palliative care settings.
Method:Two measures of generativity and ego-integrity were modified and combined to create a new 11-item questionnaire, which was then administered to 143 adults. A principal-component analysis with oblique rotation was performed in order to identify underlying components that can best account for variation in the 11 questionnaire items.
Results:The two-component solution was consistent with the items that, on conceptual grounds, were intended to comprise the two constructs assessed by the questionnaire.
Significance of Results:Results suggest that the selected 11 items were good representatives of the larger scales from which they were selected, and they are expected to provide a useful means of measuring these concepts near the end of life.
Assessment of the impact of comorbidity on the survival of cancer patients treated by palliative care teams
- Claudio Calvo-Espinos, Estefania Ruiz De Gaona-Lana, Cristina Gonzalez-Anguren, Marcos Lama-Gay
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- Published online by Cambridge University Press:
- 03 September 2014, pp. 1049-1055
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Objective:
The usefulness of the age-adjusted Charlson Comorbidity Index (ACCI) as a gauge of the impact of comorbidity on survival is known in the geriatric population. In palliative care, there is little research studying the correlation between comorbidity and survival in the advanced stages of oncological disease. The aim of our study was to explore the impact of comorbidity, measured with the ACCI, on survival in our patients. Our hypothesis was that higher ACCI scores would be associated with lower survival rates after the first visit.
Method:We conducted a prospective observational study over one year. Patients were attended by palliative home care teams. The main variables were: survival from metastatic disease after the first visit and ACCI score on the first visit. We also employed a descriptive analysis and a Kaplan–Meier survival analysis, including different ranges of ACCI scores.
Results:The final sample included 66 subjects. The standard patient was a 76-year-old man with lung cancer who had received chemotherapy. The overall average ACCI score was 10.45. Significant differences were found between the different locations of metastatic disease (greater survivals in breast, ovary, and prostate; p = 0.005) and some treatments (hormone and radiotherapy; p = 0.001 for each), but not from the first visit. We found lower survival rates among lung cancer patients with higher comorbidity (ACCI ≥ 11, p = 0.047), with no differences on other primary locations or overall values.
Significance of results:The data show that comorbidity measured by the ACCI may be an interesting prognostic factor during the late stages of disease, as we have found in lung cancer. More research is certainly needed.
Utilization of palliative care principles in nursing home care: Educational interventions
- Berit Seiger Cronfalk, Britt-Marie Ternestedt, Lise-Lotte Franklin Larsson, Eva Henriksen, Astrid Norberg, Jane Österlind
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- Published online by Cambridge University Press:
- 15 June 2015, pp. 1745-1753
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Objective:
This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care.
Method:Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used.
Results:The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people.
Significance of results:Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.
The lived experience of volunteering in a palliative care biography service
- Elizabeth Beasley, Joanne Brooker, Narelle Warren, Jane Fletcher, Christopher Boyle, Adriana Ventura, Susan Burney
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- Published online by Cambridge University Press:
- 12 February 2015, pp. 1417-1425
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Objective:
Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology.
Method:The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis.
Results:Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography.
Significance of Results:It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.
The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry
- Farya Phillips
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- 03 September 2014, pp. 1057-1069
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Objective:
Adolescents are considered the group most susceptible to negative psychosocial outcomes when faced with a parent's illness. However, there has been extremely limited research on the adolescent's adjustment to advanced parental cancer. The aim of our study was to gain understanding of the experiences of adolescents, in their own words, to gather pilot data about the needs of this population that will be valuable in developing interventions for adolescents facing parental cancer.
Method:A hermeneutic phenomenological approach was applied using in-depth semistructured interviews to inquire about adolescents' experiences. Some 10 adolescents (7 males, 3 females) aged 14–17 were interviewed.
Results:Four essential themes about adolescents living with a parent's advanced cancer emerged from the analysis: “life interrupted,” “being there,” “managing emotions,” and “positives prevail.” These findings underscore the significant impact an advanced cancer diagnosis can have on a family unit and suggest that the experience may also have the potential of creating opportunities for growth and well-being. Our findings reinforce previous results that advocate for the importance of family and peer support, positive attitude, and open communication when a family is coping with advanced parental cancer.
Significance of results:Understanding how adolescents gain strength from their relationships with family and peers offers healthcare professionals an opportunity to have services and strategies in place to foster these relationships.
Review Article
Enabling occupation at the end of life: A literature review
- Katherine Mills, Angela Payne
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- Published online by Cambridge University Press:
- 15 June 2015, pp. 1755-1769
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Objective:
Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.
Method:Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.
Results:Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.
Significance of Results:A “good death” involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.
Original Articles
An interpretative phenomenological analysis exploring the lived experience of individuals dying from terminal cancer in Ireland
- Kara McTiernan, Michael O'Connell
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- 08 May 2014, pp. 641-651
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Objective:
The experience of living with dying has attracted limited research. We utilized interpretive phenomenological analysis to explore the lived experience of individuals with terminal cancer receiving palliative care in Ireland.
Method:Participants were purposely selected from public interviews that had been conducted between 2006 and 2011. The study included the accounts of eight participants (N = 8; six females and two males) with a diagnosis of terminal cancer. Participant ages ranged from 36 to 68 years.
Results:Three master themes emerged from the analysis: the personal impact of diagnosis, the struggle in adjusting to change, and dying in context. The results revealed that participants were still living while simultaneously dying. Interestingly, participants did not ascribe new meaning to their lives. The terminal illness was understood within the framework of the life that had existed before diagnosis. They strove to maintain their normal routines and continued to undertake meaningful activities. Management of unfinished business and creation of a legacy were salient tasks. Social withdrawal was not present; rather, participants engaged in emotional labor to sustain valued roles. However, we found that within the public domain there is a paucity of education and discourse supporting individuals at the end of life. The hospice was noted as an important external resource. Each participant experienced a unique dying process that reflected their context.
Significance of Results:Healthcare professionals need to recognize the subjectivity of the dying process. Dying individuals require support and options to maintain their personhood.
Bereavement life review improves spiritual well-being and ameliorates depression among American caregivers
- Michiyo Ando, Felicia Marquez-Wong, Gary B. Simon, Haruko Kira, Carl Becker
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- Published online by Cambridge University Press:
- 10 March 2014, pp. 319-325
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Objective:
The aim of our study was to investigate the utility of bereavement life review (BLR) to elevate spiritual well-being and alleviate depression among Hawaiian-American caregivers, and to identify changes that occur when caring for their loved ones up to the time of death.
Method:Bereavement life review therapy was provided for 20 bereaved Hawaiian Americans. In the first session, subjects reviewed memories of the deceased with a therapist, who recorded their narratives and collected them into a personal history book. During the second session, subjects discussed the contents of this book. Caregivers completed the Functional Assessment Chronic Illness Therapy–Spiritual (FACIT–Sp) questionnaire and the Beck Depression Inventory, Second Edition (BDI-II) pre- and post-intervention. Subjects also described changes in their views that occurred during the caring process in response to questions.
Results:FACIT–Sp scores significantly increased from 34.1 ± 9.63 to 36.3 ± 10.6 (t = –2.6, p < 0.05, and BDI scores significantly decreased from 11.7 ± 7.7 to 8.8 ± 7.0 (t = 2.27, p < 0.05). Five categories were chosen from the narratives on changes that had occurred during caregiving and due to the deceased death: “Learning from practical caring experience,” “Positive understanding of patients,” “Recognition of appreciation,” “Self-change or growth,” and “Obtaining a philosophy.”
Significance of Results:These findings show the applicability of bereavement life review therapy for Hawaiian families, including efficacy for spiritual well-being and depression. The comments of the caregivers also indicate the potential of the therapy for identifying the positive aspects of caring for terminally ill patients.
A palliative care hotline for multiple sclerosis: A pilot feasibility study
- Andrea K Knies, Heidrun Golla, Julia Strupp, Maren Galushko, Sabine Schipper, Raymond Voltz
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- Published online by Cambridge University Press:
- 05 September 2014, pp. 1071-1078
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Objective:
Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.
Method:The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).
Results:During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.
Significance of results:Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.
Review Article
A systematic review of ovarian cancer and fear of recurrence
- Melissa Ozga, Carol Aghajanian, Shannon Myers-Virtue, Glynnis McDonnell, Sabrina Jhanwar, Shira Hichenberg, Isabel Sulimanoff
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- Published online by Cambridge University Press:
- 02 March 2015, pp. 1771-1780
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Objective:
To assess demographic, medical, and psychological factors that are associated with fear of recurrence (FCR) in ovarian cancer patients.
Method:We searched PubMed, EMBASE, Cochrane, CINAHL, and PsycINFO. For PubMed, a search using Medical Subject Headings (MeSH) was run, as well as a text-word search from 1990 to July of 2014. The search terms used consisted of ovarian terms, fear terms, and recurrence/progression themes. Title and abstract reviews were conducted by two independent reviewers to determine eligibility, and discrepancies were decided by a third reviewer. Full-text reviews of potentially eligible articles were conducted by the review team, which met regularly to ensure the reliability of eligibility ratings across all articles.
Results:A total of 15 articles met our inclusion criteria. Nine were quantitative studies that utilized a cross-sectional design, and the other six included three qualitative studies, two small intervention studies, and one study that utilized content analysis to explore written correspondence among ovarian cancer patients. FCR was reported as a significant concern for both older and younger women at both early and advanced stages. Women were distressed about recurrence at various times during their treatment and posttreatment. FCR was noted to be prevalent around cancer follow-up examinations. Many women reported not receiving adequate support for recurrence. FCR was also shown to be linked in some way to hopelessness, faith/spirituality, and posttraumatic stress disorder (PTSD). FCR was also linked to patients' anxiety about death and dying and uncertainty about the future of their medical health.
Significance of Results:This review demonstrates that FCR is prevalent in the ovarian cancer population. Moreover, cancer recurrence fears are not adequately assessed or treated. More information is needed on the factors that may be related to women's fears about recurrence of ovarian cancer. In addition, a validated measure of FCR among ovarian cancer patients as well as a treatment intervention are needed.
Original Articles
Psychologists involved in cancer palliative care in Japan: A nationwide survey
- Kasumi Nakajima, Yumi Iwamitsu, Mei Matsubara, Akira Oba, Kei Hirai, Tatsuya Morita, Yoshiyuki Kizawa
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- 13 March 2014, pp. 327-334
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Objective:
The aim of this study was to clarify, using a nationwide survey, what is perceived as necessary knowledge and skills for psychologists involved in cancer palliative care in Japan, the expectations of medical staff members, and the degree to which these expectations are met.
Method:We conducted a questionnaire survey of psychologists involved in cancer palliative care. A total of 419 psychologists from 403 facilities were asked to fill out the questionnaire and return it anonymously. Some 401 psychologists (89 males, 310 females, and 2 unspecified; mean age, 37.2 ± 9.5 years) responded about necessary knowledge and skills for psychologists working in cancer palliative care, the necessity for training, expectations at their current workplace, and the degree to which expectations are met.
Results:More than 90% of participants responded that many kinds of knowledge and skills related to the field of cancer palliative care are necessary. Over 80% of participants indicated a necessity for training related to these knowledge and skills. Although more than 50% (range, 50.1–85.8%) of participants responded that such services as “cooperation with medical staff within a hospital,” “handling patients for whom psychological support would be beneficial,” and “assessment of patients' mental state” were expected at their workplace, fewer than 60% (31.4–56.9%) responded that they actually performed these roles.
Significance of Results:Our results show that many psychologists in cancer palliative care feel unable to respond to the expectations at their current workplace and that they require more adequate knowledge and skills related to cancer palliative care to work effectively. No other nationwide surveys have generated this type of information in Japan, so we believe that the results of our study are uniquely important.
Spirituality in the context of life-threatening illness and life-transforming change
- William C. Young, Sheeba R. Nadarajah, Perry R. Skeath, Ann M. Berger
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- Published online by Cambridge University Press:
- 28 April 2014, pp. 653-660
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Objective:
Individuals with life-threatening illness often engage in some form of spirituality to meet increased needs for meaning and purpose. This study aimed to identify the role of spirituality in persons who had reported positive, life-transforming change in relation to life-threatening cancer or cardiac events, and to connect these roles to palliative and supportive care.
Method:A purposive sample of 10 cardiac survivors and 9 cancer survivors was recruited. Once the participants had given informed consent and passed screening in relation to life-transforming change and distress, they engaged in a semistructured one-hour qualitative interview on the theme of how their life-transforming change occurred in the context of their life-threatening illness. In the present article, our phenomenological analysis focuses on participants' references to purpose and meaning in their lives, with particular attention to the role and context of participants' spirituality.
Results:Participants mentioned spirituality, meaning, and purpose in many contexts, including connecting with family and friends, nature, art, music, and sometimes creating a relationship with God. Participants often accessed spirituality by enhancing connections in their own lives: with a higher power, people, their work, or themselves. These enhanced connections gave participants greater meaning and purpose in their lives, and substantially helped participants to adjust to their life-threatening illnesses.
Significance of results:Understanding the roles and contexts of spirituality among patients with a life-threatening illness allows us to develop better palliative and supportive care plans. Spiritually oriented supportive care may include support groups, yoga, meditation, nature, music, prayer, or referral to spiritual or religious counselors. A quantitative scale is needed to help healthcare clinicians assess the spiritual and coping needs of individuals with life-threatening illness.
Infomarkers for transition to goals consistent with palliative care in dying patients
- Yingwei Yao, Janet Stifter, Miriam O. Ezenwa, Muhammad Lodhi, Ashfaq Khokhar, Rashid Ansari, Gail M. Keenan, Diana J. Wilkie
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- Published online by Cambridge University Press:
- 25 February 2015, pp. 1427-1434
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Objective:
Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental cost of caring for the dying. The aim of our study was to identify changes in the plans of care that represent infomarkers, which signal a transition of care goals from nonpalliative care ones to those consistent with palliative care.
Method:Using an existing electronic health record database generated during a two-year longitudinal study of nine diverse medical–surgical units from four Midwest hospitals and a known group approach, we evaluated patient care episodes for 901 patients who died (mean age = 74.5 ± 14.6 years). We used ANOVA and Tukey's post-hoc tests to compare patient groups.
Results:We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of nonpalliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n = 507), infomarkers added on the admission plan (n = 194), infomarkers added on a post-admission plan (minor transitions, n = 109), and infomarkers added and nonpalliative care diagnoses removed on a post-admission plan (major transition, n = 91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients.
Significance of Results:EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories in order to conduct big-data research, comparative effectiveness studies, and health-services research.
Communicating bodily changes: Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations
- Febe Friberg, Eva Lidén, Cecilia Håkanson, Joakim Öhlén
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- Published online by Cambridge University Press:
- 02 May 2014, pp. 661-671
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Objective:
To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.
Method:Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).
Results:Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.
Significance of results:The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.
Haloperidol, risperidone, olanzapine and aripiprazole in the management of delirium: A comparison of efficacy, safety, and side effects
- Soenke Boettger, Josef Jenewein, William Breitbart
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- Published online by Cambridge University Press:
- 05 September 2014, pp. 1079-1085
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Objective:
The aim of this study was to compare the efficacy and side-effect profile of the typical antipsychotic haloperidol with that of the atypical antipsychotics risperidone, olanzapine, and aripiprazole in the management of delirium.
Method:The Memorial Delirium Assessment Scale (MDAS), the Karnofsky Performance Status (KPS) scale, and a side-effect rating were recorded at baseline (T1), after 2–3 days (T2), and after 4–7 days (T3). Some 21 cases were case-matched by age, preexisting dementia, and baseline MDAS scores, and subsequently analyzed.
Results:The baseline characteristics of the medication groups were not different: The mean age of the patients ranged from 64.0 to 69.6 years, dementia was present in between 23.8 and 28.6%, and baseline MDAS scores were 19.9 (haloperidol), 18.6 (risperidone), 19.4 (olanzapine), and 18.0 (aripiprazole). The doses of medication at T3 were 5.5 mg haloperidol, 1.3 mg risperidone, 7.1 mg olanzapine, and 18.3 mg aripiprazole. Over one week, the decline in MDAS scores between medications was equal, and no differences between individual MDAS scores existed at T2 or T3. After one week, the MDAS scores were 6.8 (haloperidol), 7.1 (risperidone), 11.7 (olanzapine), and 8.3 (aripiprazole). At T2, delirium resolution occurred in 42.9–52.4% of cases and at T3 in 61.9–85.7%; no differences in assessments between medications existed. Recorded side effects were extrapyramidal symptoms (EPSs) in haloperidol- and risperidone-managed patients (19 and 4.8%, respectively) and sedation with olanzapine (28.6%).
Significance of Results:Haloperidol, risperidone, aripiprazole, and olanzapine were equally effective in the management of delirium; however, they differed in terms of their side-effect profile. Extrapyramidal symptoms were most frequently recorded with haloperidol, and sedation occurred most frequently with olanzapine.
The association between religiosity and resuscitation status preference among patients with advanced cancer
- Marvin O. Delgado-Guay, Gary Chisholm, Janet Williams, Eduardo Bruera
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- Published online by Cambridge University Press:
- 05 March 2015, pp. 1435-1439
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Objective:
The potential influence of patient religious and spiritual beliefs on the approach to end-of-life care and resuscitation status preferences is not well understood. The aim of this study was to assess the association between religiosity and resuscitation preferences in advanced-cancer patients.
Method:We performed a secondary analysis of a randomized controlled trial that evaluated the influence of physician communication style on patient resuscitation preferences. All patients completed the Santa Clara Strength of Religious Faith Questionnaire–Short Form (SCSRFQ–SF) and expressed their resuscitation preferences. We determined the frequency of resuscitation preferences and its association with intensity of religiosity.
Results:A total of 78 patients completed the study. The median age was 54 years, with a range of 18–78. Some 46 (59%) were women; 57 patients (73%) were Caucasian, 15 (19%) African American, and 5 (7%) Hispanic. A total of 46 patients (56%) were Protestant and 13 (17%) Catholic. Some 53 of 60 patients who chose Do Not Resuscitate status (DNR) (88%) and 16 of 18 patients who refused DNR (89%) for a video-simulated patient were highly religious (p = 0.64). When asked about a DNR for themselves after watching the videos, 43 of 48 who refused DNR (90%) and 26 of 30 patients who chose DNR (87%) were highly religious (p = 0.08). The Spearman correlation coefficient for patients choosing DNR for themselves and intensity of religiosity was r = –0.16 (p = 0.16). Some 30 patients (38%) who chose DNR for the video patient refused DNR for themselves, and 42 who chose DNR for both the video patient and themselves (54%) were highly religious (p = NS).
Significance of Results:There was no significant association between intensity of patient religiosity and DNR preference for either the video patient or the patients themselves. Other beliefs and demographic factors likely impact end-of-life discussions and resuscitation status preferences.