Palliative Care Doctors Research Articles

Health professionals’ and caregivers’ perspectives on improving paramedics’ provision of palliative care in Australian communities: a qualitative study

ObjectivesParamedics have the potential to make a substantial contribution to community-based palliative care provision. However, they are hindered by a lack of policy and institutional support, as well as targeted...

Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

Bereaved Family Caregivers Perception of Trust in Palliative Care Doctors by Patients with Terminal Cancer

Trust is a key factor in achieving a good death. However, few studies have focused on factors that help patients with terminal cancer establish trusting relationships with their palliative care doctors. This exploratory qualitative study, conducted in Japan, was designed to identify factors related to terminal cancer patients’ trust in their doctors. Semi-structured interviews were conducted with 18 caregivers and grounded theory was the research approach chosen to guide this study. The data revealed seven factors related to the trust to palliative care doctors, including caring attitude, symptom management, courteous and specific explanations, long-term involvement in the patient’s care, being faced with inevitable death, good impression of the institution, and referral by a trusted doctor. These factors were categorized into three main themes: [1] palliative care doctors, [2] patients with terminal cancer, and [3] professional reputation. There is potential for improving end-of-life experiences through understanding and implementing interventions to ensure trust identified by these caregivers

Impact of bedside ultrasound on care in specialist palliative care units: a qualitative study

ObjectivesTo explore the experiences of palliative care doctors regarding the clinical impact of ultrasound in specialist palliative care units (SPCUs).MethodsThe study adopted a qualitative research design using semistructured interviews and...

‘It breaks a narrative of paramedics, that we’re lifesavers’: A qualitative study of health professionals’, bereaved family members’ and carers’ perceptions and experiences of palliative paramedicine

Background: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. Aim: To elicit paramedics’, palliative care doctors and nurses’, general practitioners’, residential aged care nurses’ and bereaved families and carers’ experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. Setting/participants: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. Results: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). Conclusion: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care.

Palliative care use and utilization determinants among patients treated for advanced stage lung cancer care in the community and academic medical setting.

Despite clinical guidelines, palliative care is underutilized during advanced stage lung cancer treatment. To inform interventions to increase its use, patient-level barriers and facilitators (i.e., determinants) need to be characterized, especially among patients living in rural areas or those receiving treatment outside academic medical centers. Between 2020 and 2021, advanced stage lung cancer patients (n = 77; 62% rural; 58% receiving care in the community) completed a one-time survey assessing palliative care use and its determinants. Univariate and bivariate analyses described palliative care use and determinants and compared scores by patient demographic (e.g., rural vs. urban) and treatment setting (e.g., community vs. academic medical center) factors. Roughly half said they had never met with a palliative care doctor (49.4%) or nurse (58.4%) as part of cancer care. Only 18% said they knew what palliative care was and could explain it; 17% thought it was the same as hospice. After palliative care was distinguished from hospice, the most frequently cited reasons patients stated they would not seek palliative care were uncertainty about what it would offer (65%), concerns about insurance coverage (63%), difficulty attending multiple appointments (60%), and lack of discussion with an oncologist (59%). The most common reasons patients stated they would seek palliative care were a desire to control pain (62%), oncologist recommendation (58%), and coping support for family and friends (55%). Interventions should address knowledge and misconceptions, assess care needs, and facilitate communication between patients and oncologists about palliative care.

Hospice as “treatment” for BPSD: finding an ethical way forward

Patients with Behavioral and Psychological Symptoms of Dementia can be among the most challenging patients to treat. Even when their behaviors improve with treatment, just the history of their behaviors can make them difficult to place in a nursing home or memory care unit. Historically hospice has only been used as an option for patients who meet the Medicare criteria for hospice; however, prognostication of likelihood of death within 6 months is difficult to do, even in patients with advanced dementia. Other criteria such as the ADEPT criteria have been used, though prognostication is difficult even with these criteria. Quality of Life and suffering are not technically hospice criteria in the USA; furthermore, defining quality of life in advanced dementia is challenging and suffering in dementia patients has never really been operationalized, except in patients with overt signs of distress such as screaming.This session will present a case of a man with advanced dementia who did not meet the traditional criteria for hospice, as he was fully ambulatory, able to feed himself finger foods and even able to enjoy listening and dancing to his favorite music. He had only lost 2 pounds over the past year, even though his weight was 50lbs lower than it had been in his prime, when he lived in the community. He had no ongoing medical comorbidities that would shorten his life; he had pulled through 2 bouts of COVID without issue during his time on the unit. He had a significant history of aggression which, at the time of the hospice referral, mostly came out sporadically when resisting care or with redirection from wandering into the rooms of other patients. He had some other undesirable behaviors such as urinating on the floor. He had been previously kicked out of a couple of nursing homes because of aggressive behavior towards other residents. He had been cared for on a geripsychiatry unit for 10 months, as his history made him unplaceable in conventional nursing homes and the option of a state hospital placement was not available. The palliative care doctor and the director of a hospice with an academic affiliation decided to use his pacing as a sign of "suffering" and contended that the usual treatment for BPSD (which included antipsychotics and mood stabilizers) on the geripsychiatry unit was prolonging his life and hence his "suffering". The palliative care doctor referred to him as a "hothouse flower"; she presented hospice the best option to the family (who had barely visited him in the 10 months he was on the unit) and they enthusiastically espoused this course of treatment. He was referred to the main inpatient hospice where he received palliative sedation and expired within 2 weeks.This case will examine the process of this referral; attempt to clarify the underlying prejudices of some of the parties involved towards patients with dementia that may have driven some of the decision-making; clarify some of the ethical issues in the decision-making to use hospice for this problematic patient. The experience in the Netherlands where some geriatricians have published their experience with palliative sedation in BPSD and have even developed a workgroup with guidelines will be reviewed as well.

Experience of using teleconsultation in the department of outpatient palliative care in Kaliningrad

The article discusses the basic concepts of teleconsultation and features of this type of medical activity in the provision of palliative care. The reasons of relevance of introducing video-consultation in daily practice of palliative care doctor are analyzed. The article presents the data about the results of application of teleconsultation in providing palliative care in outpatient settings on the basis of department of outpatient palliative care for adults.

Caring for patients near the end-of-life at Mayo Clinic: a narrative

I’m a palliative care and hospice doctor focusing my clinical care on families near the end of life. It has been a great privilege to be welcomed to the bedside of so many seriously ill and dying patients to care for them and their families. Pursuing geriatrics and palliative care were not always met with welcome sentiments from my peers. “You’re going to take care of sick and dying patients.” “It is so depressing.” My experience is that geriatrics and palliative care are a little like peeking through the old skeletal keyhole into a living room. You have to get up real close to peek inside and if you dare to go through and enter in, a whole new world opens. It is often a sacred space. A space for a team of professionals caring together.

Opioids in advanced lung malignancy: a clinical audit of opioid prescription, patient education and safeguarding

Opioids have an important role in symptom management for people with advanced cancer. Clinical guidelines recommend patient education to ensure the safe use of opioids; however, no Australian studies have explored current education and safeguarding practices when opioids are initiated to advanced cancer patients. To investigate risk assessment, safeguarding and education practices when opioids are first prescribed to advanced lung cancer patients. A retrospective medical record audit of outpatients with advanced non-small cell lung cancer seen at a tertiary Australian hospital between 1 January 2015 and 31 December 2019 and prescribed strong opioids for cancer-related symptoms. Of 1022 patients attending the lung cancer clinic, 205 were newly initiated on an opioid. Opioid-related risks including previous recreational drug use (28; 13.6%) and history of falls (16; 7.9%) were infrequently documented. Opioid-related safeguards and adverse effects management were variably instituted: written general practitioner correspondence at opioid initiation (62; 30%), clinic follow up (186; 91%) and laxative co-prescription (55; 26.8%). Most patients (137; 66.8%) received no documented opioid education on drug initiation. There was no association between age (P = 0.653), number of comorbidities (P = 0.569) or chronic alcohol use (P = 0.263) and the provision of education on opioid initiation. Palliative care doctors or nurse practitioners were eight times more likely to document opioid education than medical oncologists (odds ratio=8.5; confidence interval=2.9-24.8; P < 0.0001). Guideline-recommended risk assessment, safeguards and patient education were infrequently documented when opioids were initiated. Clinician training, decision-assist prompts in electronic prescribing software and written education resources for patients may address these gaps in care.

Moral distress amongst palliative care doctors working during the COVID-19 pandemic: A narrative-focussed interview study

Background: Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives. Aim: To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level. Design: In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives. Setting/participants: Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland. Results: Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed. Conclusions: Restrictions had a considerable impact on palliative care doctors’ ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced.

Association between oral health and advisability of oral feeding in advanced cancer patients receiving palliative care: a cross-sectional study

PurposeMaintenance of oral feeding is important in terms of maintaining and improving the quality of life in terminal cancer patients receiving palliative care. Although adequate oral health status is essential for oral feeding in hospitalized patients, the relationship between oral health and oral feeding in patients receiving palliative care remains unclear. This cross-sectional study aimed to examine how the general condition and oral health status of these patients relate to decisions regarding their nutritional intake methods.MethodsThis retrospective cross-sectional study included 103 terminal cancer patients (59 men and 44 women; mean age, 73.8 ± 10.9 years) who received palliative care between April 2017 and August 2019. The nutritional method was assessed using the Functional Oral Intake Scale (FOIS). We assessed two types of nutritional methods: (1) the method advised by the attending physician until the initial dental examination (FOIS-I) and (2) the recommended method based on consultation with a palliative care doctor and dentist after the initial oral examination (FOIS-R). Furthermore, the participants’ basic information and Dysphagia Severity Scale (DSS) and Oral Health Assessment Tool (OHAT) scores were assessed.ResultsThere was a divergence between FOIS-I and FOIS-R. FOIS-R was significantly higher than FOIS-I (p < 0.001). Multiple regression analysis revealed that the time until death, DSS score, and OHAT score had a significant impact on determining the food form for oral feeding.ConclusionsAppropriate oral health assessment is important in determining the food form and indication for oral feeding among patients receiving palliative care.

Initiation of paediatric advance care planning: Cross-sectional survey of health professionals reported behaviour.

BackgroundGlobally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional.MethodUnderpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified.ResultsResponses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction.ConclusionAlthough advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Feasibility and efficacy of a multidisciplinary palliative approach in patients with advanced interstitial lung disease. A pilot randomised controlled trial

Introduction and ObjectivesInterstitial lung diseases (ILDs) encompass a heterogeneous group of parenchymal lung disorders which have a significant burden on quality of life and exercise. The primary purpose of this randomised pilot trial performed in advanced ILD was to determine the feasibility and efficacy of a multidisciplinary palliative care approach (including physiotherapist, psychologist, pulmonologists, and palliative care doctors) to relieve patients’ symptoms of dyspnoea, depression measured with the Center for Epidemiological Studies-Depression (CES-D) scale and quality-of-life (QoL) at 6 and 12 months. Matherials and MethodsFifty patients with confirmed interstitial lung disease at computed tomography (CT) scan and advanced disease were enrolled at our clinic. Patients were randomised to usual care group vs intervention group; in the intervention group, patients were scheduled to meet a physiotherapist, a psychologist, a palliative care doctor, and a pulmonologist specialized in ILD care. Data on dyspnoea, cough, quality of life and depression were recorded; patients in the intervention group were also tested to assess lower body flexibility and strength. ResultsBoth groups showed a worsening in dyspnoea during the time course of the trial, but the Borg scale was less in the intervention group at 6 and 12 months. A similar trend was observed also for the CES-D scale. No differences were observed for the other scales. ConclusionsA multi-disciplinary palliative care intervention in patients with advanced fibrosing interstitial lung disease is feasible and effective. Trial registrationNCT02929966 on ClinGovTrial.

Factors Influencing Potentially Futile Treatments at the End of Life in a Multiethnic Asian Cardiology Setting: A Qualitative Study.

Modern medicine enables clinicians to save lives and prolong time to death, yet some treatments have little chance of conferring meaningful benefits for patients nearing the end-of-life. What clinicians perceive as driving futile treatment in the non-Western healthcare context is poorly understood. This study aimed to explore clinicians' perceptions of the factors that influence futile treatment at the end of life within a tertiary hospital cardiac care setting. We conducted semi-structured interviews with cardiologists, cardiac surgeons, and palliative care doctors from a large national cardiology center in Singapore. Interviews were transcribed verbatim and thematically analyzed. A total of 32 clinicians were interviewed. We identified factors that contributed to the provision of potentially futile treatment in these theme areas: patient- and family-related, clinician-related, and institutional and societal factors. Family roles and cultural influences were most commonly cited by participants as affecting end-of-life decisions and altering the likelihood of futile treatment. Specialty-specific alignments within cardiology and availability of healthcare resources were also important factors underpinning futile treatment. Family-related factors were a primary driver for futile treatment in a non-Western, multicultural setting. Future interventions should consider a targeted approach accounting for cultural and contextual factors to prevent and reduce futile treatment.

Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study.

A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.

Justin Amery: GP, palliative care doctor, and writer

Credit: Damian Halliwell Justin Amery was an innovative GP, a palliative care pioneer, mentor, educator, poet, and the author of 12 books. He was also, colleagues say, a maverick. Learning...

West Midlands general adult psychiatry higher trainees’ peer group wellbeing away day

AimsThe main aim of the wellbeing day was to increase the sense of wellbeing amongst psychiatry higher trainees in the West Midlands. We first wanted to understand the wellbeing needs of the trainees and what they hoped to get out of an away day. We wanted then to evaluate whether the away day had met these needs.BackgroundThe Psychiatry Trainees Committee (PTC) published a report ‘Supported and Valued? A trainee led review into morale and training within psychiatry’ in 2017. The importance of feeling valued and supported and the value trainees place upon the support of their peers, were highlighted in this report.As higher trainees we are often geographically isolated from each other, and whilst the peer group meet once per month, this is mostly for academic lectures resulting in poor familiarity amongst trainees which can leave trainees feeling unknown and unsupported.MethodWe decided to apply to HEE for funding for an away day. We surveyed the peer group, asking what they most wanted to get out of an away day. The results showed that ‘a morale boost’, ‘destress/relaxation’ and ‘opportunity to get to know other trainees’ were the trainee's priorities, followed by improving leadership, team working and negotiation skills.With these priorities in mind, an away day programme was developed which included a talk from Dr Mike Blaber, a palliative care doctor with a special interest in doctors’ wellbeing, a ‘getting to know you’ art activity and a team building GPS treasure hunt funded by HEE. The day finished with a dinner in a local restaurant sponsored by Recordati. The rest of the day was paid for by the peer group.Result28 higher trainees attended the away day which was held in Birmingham on 11/07/2019. Trainees gave feedback on the day using an online anonymous survey. 81% of attendees said the away day decreased their stress levels. 90% said that the day had increased their sense of wellbeing. 86% felt an increased sense of belonging and less isolated as a trainee.ConclusionRegular trainee away days may help tackle isolation and increase morale which is linked to better patient outcomes. Improving trainees’ sense of wellbeing leads to better job satisfaction, which may ultimately lead to higher rates of retention within psychiatry.

Strong emotional reactions for doctors working in palliative care: Causes, management and impact. A qualitative study.

Doctors working in palliative care services are exposed to challenging emotional environments almost daily. Strong-emotional reactions experienced in this setting have implications for patient care and doctor wellbeing. Existing research has not focused on doctors working in specialist palliative care. This study aimed to understand what strong emotional reactions are experienced by doctors working in specialist palliative care, the cause of these strong emotional reactions and the impact they have on the lives of palliative care doctors. Qualitative descriptive design included grounded theory techniques. Semi-structured, audio-recorded individual interviews explored doctors' memories of strong emotional reactions and challenging aspects in palliative care work, how emotions were managed and affected doctors' lives. Twenty doctors were recruited from a specialist palliative care service within a public health network in Melbourne, Australia, comprising of two inpatient units, a consult service and outpatient clinic. Palliative care doctors experience a myriad of strong emotions in their line of work. Experiences found to elicit strong emotional reactions included patient, family and staff distress and organizational issues. Strong emotional reactions impacted clinical behaviours, patient care and doctors' personal lives. Strategies developed for managing strong emotional reactions included debrief, setting boundaries, avoidance and self-reflection, along with non-work strategies such as time with family. Whilst emotionally challenging experiences are unavoidable and necessary in a palliative care doctor's development, doctors need to be supported to avoid adversely impacting patient care or their own wellbeing.

Refractory suffering at the end of life and the assisted dying debate: An interview study with palliative care nurses and doctors

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.