Palliative Specialists Research Articles

Burn Surgeon and Palliative Care Physician Attitudes Regarding Goals of Care Delineation for Burned Geriatric Patients.

Palliative care specialists (PCS) and burn surgeons (BS) were surveyed regarding: 1) importance of goals of care (GoC) conversations for burned seniors; 2) confidence in their own specialty's ability to conduct these conversations; and 3) confidence in the ability of the other specialty to do so. A 13-item survey was developed by the steering committee of a multicenter consortium dedicated to palliative care in the injured geriatric patient and beta-tested by BS and PCS unaffiliated with the consortium. The finalized instrument was electronically circulated to active physician members of the American Burn Association and American Academy for Hospice and Palliative Medicine. Forty-five BS (7.3%) and 244 PCS (5.7%) responded. Palliative physicians rated being more familiar with GoC, were more comfortable having a discussion with laypeople, were more likely to have reported high-quality training in performing conversations, believed more palliative specialists were needed in intensive care units, and had more interest in conducting conversations relative to BS. Both groups believed themselves to perform GoC discussions better than the other specialty perceived them to do so. BS favored leading team discussions, whereas palliative specialists preferred jointly led discussions. Both groups agreed that discussions should occur within 72 hours of admission. Both groups believe themselves to conduct GoC discussions for burned seniors better than the other specialty perceived them to do so, which led to disparate views on perceptions for the optimal leadership of these discussions.

How and when do patients request life-expectancy estimates? Evidence from hospice medical consultations and insights for practice

ObjectiveTo break new ground by directly examining how patients seek life-expectancy estimates, and how doctors support them in doing so. MethodsConversation analytic examination of 10 recorded UK hospice consultations involving 3 palliative specialists. ResultsLife-expectancy estimate episodes frequently begin after a doctor has given a patient an opportunity to shape the consultation agenda. Rather than posing direct questions, patients cautiously display their interest in receiving an estimate using statements. These often contain preparatory information about: what they already know about their prognosis, their perspective on it, and readiness to hear more. When patients do not provide this information, doctors invite it before giving an estimate. Patients’ companions also contribute to this preparatory work. ConclusionDoctors, patients, and companions collaboratively work to prepare a conversational environment wherein emotional states and uncertainties have been addressed prior to delivery of the actual estimate. This helps manage both possible emotional distress, and prognostic uncertainty entailed in seeking and delivering estimates. Practice implicationsClinicians should be mindful that rather than overtly requesting estimates, patients may seek them more cautiously. Before delivering estimates, doctors can support patients to articulate their existing understanding and perspective regarding prognosis, and their readiness to hear more.

Teamwork in primary palliative care: general practitioners\u2019 and specialised oncology nurses\u2019 complementary competencies

BackgroundGeneralists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care.MethodsA qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically.ResultsThe ideal cooperation between GPs and ONs was as a “meeting of experts” with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs’ competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly.While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients.ConclusionsThe complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.

Associations between physician home visits for the dying and place of death: A population-based retrospective cohort study.

BackgroundWhile most individuals wish to die at home, the reality is that most will die in hospital.AimTo determine whether receiving a physician home visit near the end-of-life is associated with lower odds of death in a hospital.DesignObservational retrospective cohort study, examining location of death and health care in the last year of life.Setting/ParticipantsPopulation-level study of Ontarians, a Canadian province with over 13 million residents. All decedents from April 1, 2010 to March 31, 2013 (n = 264,754)ResultsMore than half of 264,754 decedents died in hospital: 45.7% died in an acute care hospital and 7.7% in complex continuing care. After adjustment for multiple factors–including patient illness, home care services, and days of being at home–receiving at least one physician home visit from a non-palliative care physician was associated with a 47% decreased odds (odds-ratio, 0.53; 95%CI: 0.51–0.55) of dying in a hospital. When a palliative care physician specialist was involved, the overall odds declined by 59% (odds ratio, 0.41; 95%CI: 0.39–0.43). The same model, adjusting for physician home visits, showed that receiving palliative home care was associated with a similar reduction (odds ratio, 0.49; 95%CI: 0.47–0.51).ConclusionLocation of death is strongly associated with end-of-life health care in the home. Less than one-third of the population, however, received end-of-life home care or a physician visit in their last year of life, revealing large room for improvement.

Checkpoint Inhibitors, Palliative Care, or Hospice.

Checkpoint (CTLA-4, PD-1, and PD-L1) inhibitors have changed the face of oncology. A subset of patients enjoys long, gratifying treatment responses. Unfortunately, most patients do not respond even when expressing favorably markers such as PD-L1. Checkpoint inhibitors are largely palliative (though a subset have long-term cancer responses) and as such patient-related outcome measures should be included when evaluating benefits. The purpose of this review is to place checkpoint inhibitor trials within a palliation context. Included is a discussion on potential adverse effects on end-of-life care. Pivotal studies have presented efficacy and safety data but we have little published data on quality of life or symptom responses. Extension of life is approximately 2-3months with some long-term responses in a minority of patients. The cost of checkpoint inhibitors is high for utility (as measured by quality-adjusted life-year saved) and ranges from 81,000 to over 200,000 USD for quality-adjusted life-year saved. Adverse effects were suboptimally reported in multiple studies. Meaningful responses in many trials as defined by the European Society of Medical Oncology are modest. Because at least for now, checkpoint inhibitors are used in advanced cancer and largely palliative patients should be seen by palliative specialists, symptoms related to cancer assessed, and advanced directives addressed. Treatment-related autoimmune diseases represent toxicities which oncologists and palliative specialists must understand. This means that palliative care specialists should know about the benefits and adverse effects of these agents. Whether checkpoint inhibitors increase or decrease aggressive care, hospice referrals, and costs at the end of life is yet to be determined.

Palliative Specialists Urge Collaboration With Geriatric Care

Palliative Specialists Urge Collaboration With Geriatric Care

End-of-Life Palliative Care Practices and Referrals in Uganda

While early involvement and integration of palliative care with oncology can positively impact quality of life and survival of patients with advanced cancer, there is a dearth of information regarding this integration in sub-Saharan Africa. We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda. We examined the rate of referrals of cancer patients to palliative specialists via a chart review, while also surveying and interviewing doctors at the Uganda Cancer Institute (UCI) about their approaches to palliative care. All adult patients at the UCI who died in a 20-month interval from 2014 to 2015. All UCI doctors were approached for the survey and 25 (96%) participated. Seven of these doctors were also individually interviewed. Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management. Sixty-six (11.1%) of 595 patients were referred to palliative care specialists. Patients with worse ECOG performance statuses were more likely to be referred to palliative specialists (odds ratio 2.23, p = 0.03); no other factors were predictive of a referral. Median number of days lived after referral was 5 days (interquartile range 2-13). Doctors explained the low referral rate and short life expectancy after referral by limited palliative resources and a reticence to have end-of-life management conversations with patients due to cultural taboos. Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.

Primary palliative care for heart failure: what is it? How do we implement it?

Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.

Factors that influence advance directives completion amongst terminally ill patients at a tertiary hospital in Kenya

BackgroundAn advance directive (AD) is a written or verbal document that legally stipulates a person’s health care preference while they are competent to make decisions for themselves and is used to guide decisions on life-sustaining treatment in the event that they become incapacitated. AD can take the form of a living will, a limitation of care document, a do-not-resuscitate order, or an appointment of a surrogate by durable power of attorney. The completion rate of AD varies from region to region, and it is influenced by multiple factors. The objectives of this study were to determine the proportion of terminally ill patients with AD and to identify the factors that influence the completion of AD amongst terminally ill patients at a tertiary hospital in Kenya.MethodsThe study was a retrospective survey. All available records of terminally ill patients seen at Aga Khan University Hospital, Nairobi, between July 2010 and December 2015, and that met the inclusion criteria were included in the study.ResultsIn total, 216 records of terminally ill patients were analyzed: 89 records were of patients that had AD and 127 records were of patients that did not have AD. The proportion of terminally ill patients that had completed AD was 41.2%. The factors that were associated with the completion of AD on bivariate analysis were history of ICU admission, history of endotracheal intubation, functional status of the patient, the medical specialty taking care of the patient, patient’s caregiver discussing the AD with the patient, and a palliative specialist review. On multivariate regression analysis, discussion of AD with a caregiver and patient’s functional impairment were the factors with statistically significant association with completion of AD.ConclusionsThe proportion of terminally ill patients that had AD in their medical records was significant. However, most terminally ill patients did not have AD. Our data, perhaps the first on the subject in East Africa, suggest that most of the factors associated with AD completion mirrored those seen in other regions of the world. Discussion between patient and their physician and patient’s functional impairment were the factors independently associated with completion of AD. Therefore, physicians need to be aware of the importance of discussions of AD with their patients.

Integration of Specialized Pain Control Services in Palliative Care: A Nationwide Web-based Survey.

Introduction:Pain control is an important part of palliative care (PC), and conventional analgesics do not provide adequate pain relief to all patients. Many patients present with complex pain syndromes that require interventional pain control measures usually deployed by pain specialists. There is adequate integration of specialized pain control services with PC elsewhere, but information about the same in our country is lacking.Materials and Methods:An internet survey was conducted among palliative specialists regarding the need and availability of pain specialists for their patients suffering from complex pain syndromes. Their attitude toward integrating specialized pain control services in their practice was also explored.Results:Majority of palliative physicians came across situations where specialists in pain would control the patients’ pain better. There was a poor availability of such services, and when available, the cost was significant. It is heartening to note that though there is poor integration of specialized pain control services with palliation, palliative physicians acknowledge the need for pain specialists and their techniques for providing pain relief for their patients.Conclusions:Effective pain control is needed in palliation, barriers however exist, and there is a need to make pain specialists and interventional techniques more freely available.

CONGENITAL TUMORS OF THE CENTRAL NERVOUS SYSTEM. REVIEW OF LITERATURE AND OWN EXPERIENCE

The article presents a review of the literature on the state of the problem of diagnosis and treatment of congenital central nervous system (CNS) tumors in children. Oncological alertness and awareness of specialists supervising pregnant women, parturient women, and young children, diagnostic features and the level of technological assistance to children with congenital CNS tumors determine the survival and prognosis of the disease. Modern methods of diagnosis and treatment make it possible to achieve satisfactory results in this category of patients. In the management team of patients and families, it is necessary to involve a palliative specialist, especially in cases of detection of noncurable tumors. Own clinical observations of patients with congenital CNS tumors are presented.

Canada needs twice as many palliative specialists

Canada doesn’t have enough palliative care doctors to give suffering patients an alternative to assisted death, the Canadian Society of Palliative Care Physicians (CSPCP) warns in a [new report][1]. The group anticipates about 62 400 Canadians will request medical assistance to die in 2017.

Technological Innovation Comes to Palliative Care: With a shortage of palliative specialists, telemedicine and remote monitoring offer relief.

At first, palliative care and technology might seem like strange bedfellows. At its core, palliative care is a very human side of medicine, relying heavily on talking with and listening to people to understand their experiences and goals. Technology, on the other hand, can often feel impersonal, cold, and one-size-fitsall. Despite this apparent disconnect, researchers and clinicians are finding new ways to harness technology to facilitate communication between patients and caregivers.

The role of rehabilitation

In individuals with life altering diseases, palliative care allows the opportunity for patients to function with the support of trained professionals at the highest level possible until death. The goals of caring for patients with life limiting diseases can only be met by the continued efforts of many health care professionals. The entire practice of rehabilitation medicine addresses function as it relates to the disease process and the impact on the individual. Medical specialties are geared toward addressing function, modifying the disease process, as possible and treating symptoms. A palliative specialist should have a basic understanding of the scope of rehabilitation medicine and how these services can benefit the palliative patient. The review aims to define rehabilitation in the palliative patient, describe its components and services, and, by the use of two cases, help the palliative specialist in providing care.

A service evaluation of an integrated model of palliative care of cystic fibrosis

Background: Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. Aim: We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. Design: A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Setting/participants: Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. Results: They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. Conclusion: This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis.

Current and emerging practice of end-of-life care in British prisons: findings from an online survey of prison nurses

BackgroundThere are concerns about prisoners and detainees not having equal access to end-of-life care while in prison. There is a lack of existing literature about the standards of end-of-life care...

Documentation of Palliative Radiation Therapy Response in the Last Six Months of Life: Are We Capturing the Data?

The integration of palliative care and standard oncologic care improves quality of life, symptoms, and survival outcomes in cancer patients. Radiation oncologists (RO) provide palliative services to many of these patients near the end of life. We sought to determine how RO document the management of symptoms for oncology patients receiving palliative radiation therapy (RT) for metastatic disease at the end of life. RO electronic medical records were retrospectively reviewed for 3,128 cancer patients from a single academic institution that had at least one hospital contact within their last 6 months of life. From this decedent database, patients with metastatic disease who received palliative RT were identified. All RO clinical notes within patients’ last 6 months of life were reviewed for documentation of symptoms, management, response to treatment, and subsequent disposition, including referrals to hospice and palliative care. There were 572 clinical encounters among 203 patients (2008-2011), ranging in age from 19-88 years old. Clinical notes included follow-up (FU) (n=111), end of treatment (EOT) (n=231), reevaluation (n=83), and consult notes (n=138). The most common documented symptom was pain (n=262), followed by neurologic symptoms (n=23). Pain score was documented 34% of the time with an average score of 6.8 (range 0-10). Patients reported an average of 1.4 pain sites per encounter with the most common sites being back (n=58) and hips (n=47). This was addressed in the treatment plan 86% of the time. The documented method of addressing symptoms included RT 74% of the time, further workup 11%, medication 7%, and a combination of treatments the remainder of the time. Response to prior RT was reported 40% of the time. There was a reported improvement in symptoms following RT in 30% of EOT notes, no improvement in 17%, no mention of response in 52%, and the focus was new pain due to recurrence in 1%. There was a reported improvement in symptoms following RT in 40% of FU notes, no improvement in 11%, no mention of response in 20%, and the focus was new pain in 29%. Overall though, 65% of patients (n=131) did not have any FU to evaluate. When RO provide palliative RT to patients with metastatic disease at the end of life, documentation consistently demonstrates RO address pain as a part of the plan. Still, a large number of patients lack documentation regarding the outcome of the intervention. Proper documentation is crucial for communication between palliative specialists and to ensure the most efficient and effective therapies are delivered during end of life. Our institution desires to implement a standardized assessment and follow-up form, gauging patients’ symptomatic control and perceived response to treatment, to facilitate improved multidisciplinary palliative care and referral. Outcome of this intervention is eagerly anticipated.

Involvement of supportive care professionals in patient care in the last month of life.

BackgroundIn the last month of life, many patients suffer from multiple symptoms and problems. Professional supportive care involvement may help to alleviate patients’ suffering and provide them with an optimal last phase of life.PurposeWe investigated how often palliative care consultants, pain specialists, psychological experts and spiritual caregivers are involved in caring for patients in the last month of life, and which factors are associated with their involvement.MethodsQuestionnaires were mailed to physicians who had attended the death of a patient from a stratified sample of 8496 deaths that had occurred in 2010 in the Netherlands. The response rate was 74 % (n = 6263).ResultsA palliative care team or consultant had been involved in the last month of life in 12 % of all patients for whom death was expected; this percentage was 3 % for pain specialists, 6 % for psychologists or psychiatrists and 13 % for spiritual caregivers. Involvement of palliative care or pain specialists was most common in younger patients, in patients with cancer and in patients who died at home. Involvement of psychological or spiritual caregivers was most common in older patients, in females, in patients with dementia and in patients who died in a nursing home. Involvement of supportive caregivers was also associated with the use of morphine and end-of-life decisions.ConclusionSupportive care professionals are involved in end-of-life care in about a quarter of all non-suddenly dying patients. Their involvement is related to the setting where patients die, to the patient’s characteristics and to complex ethical decision-making.

What’s in the Syringe? Why Does Early Integration of Palliative Care Work in Oncology? (FR464)

•Describe methods of palliative care involvement in published concurrent palliative care-oncology studies.•Describe common methods of randomization, control arms, and clinical endpoint measures in published concurrent palliative care-oncology studies.•Describe methods of communication used, with a focus on decision making and enhancing patient understanding of prognostic awareness, in published concurrent palliative care-oncology studies. Recent clinical trial data show that introducing palliative care along with standard oncologic care in patients with advanced cancer is both feasible and acceptable among outpatients. This early pairing of palliative care and active cancer therapy has led to improved quality of life, better control of depressive symptoms, and improved survival compared with standard oncologic care alone. One important question is what in the palliative care intervention is responsible for the effects observed so far. Current published simultaneous-care studies involve differences in (a) cancer type, (b) method of randomization, (c) nature of intervention, and (d) postintervention care. Understanding components of the palliative care intervention leading to maximal benefit has important implications for future clinical trial design as well as the day-to-day interactions between oncology and palliative care teams. In this session, a panel of palliative care-oncology specialists will dissect and present an analysis of key simultaneous palliative care-oncology care studies, with a focus on the mechanics of the palliative care intervention. Key studies will be analyzed for (a) timing and setting of palliative care involvement; (b) intensity of symptom control; (c) communication practices, with a focus on decision making and enhancing patient understanding and prognostic awareness; (d) chemotherapy consumption and chemotherapy allowance at the end of life; (e) outcome measures; and (f) control arm. Interventions leading to important clinical impact will be identified and correlated to hypothetical models of palliative care-oncology intervention. Attendees will have the opportunity to discuss their own interactions with oncology and share with the panel and other attendees their experiences as to what seems to be the key ingredient in successful oncology-palliative simultaneous care. Hypotheses generated from the discussions will support or challenge current models attempting to clarify why the early palliative care-oncology interaction works.

Physician-Assisted Dying: Acceptance by Physicians Only for Patients Close to Death.

This study reports on German physicians’ views on legalization of euthanasia and physician-assisted suicide, comparing this with a similar survey of UK doctors. A questionnaire was handed out to attendants of a palliative care and a pain symposium. Complete answers were obtained from 137 physicians. Similar to the UK study, about 30% of the physicians surveyed support euthanasia in case of terminal illness and more support physician-assisted suicide. In contrast, in both countries, a great majority of physicians oppose medical involvement in hastening death in non-terminal illnesses. The public and parliamentary discussion should face this opposition to assisted suicide by pain and palliative specialists.Electronic supplementary materialThe online version of this article (doi:10.1007/s40122-014-0029-z) contains supplementary material, which is available to authorized users.