Evolving Goals of Care Discussions as Described in Interviews With Individuals With Advanced Cancer and Oncology and Palliative Care Teams

2020 ◽  
pp. 104990912096920
Author(s):  
Ellis C. Dillon ◽  
Amy Meehan ◽  
Catherine Nasrallah ◽  
Steve Lai ◽  
Natalia Colocci ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Hospice Care ◽  
Depth Information ◽  
Goals Of Care ◽  
Early Integration ◽  
Team Members ◽  
Palliative Care Teams ◽  
Pain Symptoms

Background: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences. Objective: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC). Design: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams. Setting/Subjects: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California. Results: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis (“How much time do I have?”). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were “going downhill.” Conclusion: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.

Early Integration of Palliative and Supportive Care in the Cancer Continuum: Challenges and Opportunities

2013 ◽  
pp. 144-150 ◽  
Author(s):  
Mellar P. Davis ◽  
Eduardo Bruera ◽  
Daniel Morganstern
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Cancer Treatment ◽  
End Of Life ◽  
Advanced Cancer ◽  
Hospice Care ◽  
Early Integration ◽  
Challenges And Opportunities ◽  
Policy Barriers ◽  
Complicated Bereavement

Palliative care has become synonymously associated with hospice care in the minds of patients and physicians. Supportive care is a more acceptable term and leads to earlier referral. Miscommunication and a “collusion of hope” centered on cancer treatment is detrimental to care at the end of life and results in complicated bereavement. Patients, despite being told prognosis, may not comprehend the news even if delivered in an empathetic manner. There are resource and policy barriers to palliative care. However, integration of palliative care early in the management of advanced cancer has demonstrated multiple benefits without reducing survival.

Palliative care referrals in patients with advanced cancer on early-phase cancer clinical trials (EP-CTs).

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 29-29
Author(s):  
Megan Healy ◽  
Rachel Jimenez ◽  
Ryan David Nipp ◽  
Jennifer Adrienne Shin ◽  
Andrew Johnson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Median Time ◽  
Advanced Cancer ◽  
Median Number ◽  
Cancer Center ◽  
Goals Of Care ◽  
Care Services ◽  
Hospice Referral ◽  
Pain Symptoms ◽  
Future Work

29 Background: EP-CTs investigate novel therapeutic approaches for patients with cancer, but little is known about the utilization of supportive care services, specifically palliative care (PC), in this population. Methods: We conducted a retrospective review of consecutive patients enrolled on EP-CTs at the MGH Cancer Center from 2017-2019. Sociodemographic and clinical variables, including utilization of PC services, were obtained via chart review. Details of the PC evaluation were compared between patients who received first referral to PC while enrolled on an EP-CT versus those who received a PC referral at any point after diagnosis. Results: Among 426 patients enrolled on EP-CTs (median age 63 years; 44% male), 249 (59%) received a PC referral at any time following a diagnosis of cancer (median age 57 years, 58% male). Eighty-six (35%) were referred prior to enrollment on EP-CT, 44 (18%) were referred while on EP-CT, and 119 (48%) were referred post-EP-CT. Patients referred on EP-CT were younger (median 56 vs 63 years, p < 0.0001) than those enrolled on EP-CTs. For patients referred while on EP-CT, 48% had a PC consult within 30 days of enrollment (range: 0-530 days); median number of PC visits was 3 (range: 0-37); median time from first PC consult to death or termination of EP-CT was 32 days (range: 1-213). Of 44 patients referred on EP-CT, 2 (5%) died while on EP-CT. Of the remaining patients, median time from first PC consult to date of death was 79 days (IQR: 45-178 days). Most common reasons for referral included pain (22, 50%), non-pain symptoms (21, 48%), and goals of care/advanced care planning (20, 45%). Of these referrals, 13 (30%) were initiated as inpatients versus 31 (70%) as outpatients. Pain was most commonly cited for outpatient referral (35%), followed by non-pain symptoms (25%) and goals of care (23%). Non-pain symptoms (40%) and goals of care (36%) were most commonly cited reasons for inpatient referral, followed by pain (24%). Of referrals while on EP-CT, 23 (52%) were made by EP-CT staff, including MD and APP, 7 (16%) from the primary oncologist, and 1 (2%) was self-referral. 26 (57%) of patients referred to PC during trial were also referred to hospice, with a median time from last PC consult to hospice referral of 24 days (range: -2-322). Conclusions: A majority of patients with advanced cancer enrolled on EP-CTs received a PC referral. The timeline and method of referral varied, but most patients did not receive a referral until or following enrollment on an EP-CT. Future work will focus on developing a standard referral protocol for patients enrolled on EP-CTs.

End-of-life discussions with advanced cancer patients and their effects on bereaved families’ mental health.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 3-3
Author(s):  
Takashi Yamaguchi ◽  
Isseki Maeda ◽  
Yutaka Hatano ◽  
Masanori Mori ◽  
Yasuo Shima ◽  
...  
Keyword(s):  
Mental Health ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Complicated Grief ◽  
Advanced Cancer Patients ◽  
Palliative Care Teams ◽  
Prevalence Of Depression

3 Background: End-of-life (EOL) discussions are important for providing appropriate care to patients with advanced cancer at the end of their life. To explore the relationship between EOL discussions and bereaved families’ mental health, as well as the quality of the patient’s death and quality of care at the end of life. Methods: This was a nationwide questionnaire survey of bereaved families of deceased cancer patients who died at 75 sites (20 inpatient palliative care teams in acute hospitals, 33 palliative care units/inpatient hospices, and 22 outpatient clinics that provide home palliative care service) in Japan. 13,711 bereaved family members of cancer patients who died before January 2014 in each of the participating institutions were potential participants. We evaluated the prevalence and details of EOL discussions which were defined as “a discussion with physicians about the preferred place of death or resuscitation”. We also evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥ 10) and complicated grief (defined as the Brief Grief Questionnaire ≥ 8) in bereaved families. Results: 9123 questionnaires returned (response rate 67%). Of those, 80.6% had EOL discussions. After propensity score weighted adjustment, bereaved families with EOL discussion less frequently developed depression (17.3% and 21.6% ; P < 0.001) and complicated grief (13.7% and 15.9% ; P = 0.03) than without. There were significant differences in the trend test among families without and in those with EOL discussions < 1, 1–3, and > 3 months before the patient’s death, for the prevalence of depression (21.6%, 20.6%, 16.8%, and 15.5%, respectively; P trend < 0.001) and complicated grief (15.9%, 16.4%, 12.8%, and 12.9%, respectively; P trend < 0.001). Conclusions: EOL discussions may contribute to decrease depression and complicated grief in bereaved families. EOL discussions should be initiated with advanced cancer patients when physicians expect a patient’s prognosis is limited to several months.

Confidence and skills for cystic fibrosis end-of-life care

2020 ◽  
pp. bmjspcare-2020-002274
Author(s):  
Eva Harris-Skillman ◽  
Stephen Chapman ◽  
Aoife Lowney ◽  
Mary Miller ◽  
William Flight
Keyword(s):  
Cystic Fibrosis ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Further Education ◽  
Palliative Care Team ◽  
Care Team ◽  
Life Care ◽  
Team Members ◽  
Palliative Care Teams

ObjectivesOptimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.MethodsAn electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.Results35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.ConclusionsFew members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.

Impact and timing of palliative care referral.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 50-50
Author(s):  
Leslie J Blackhall ◽  
Paul W Read ◽  
George Stukenborg ◽  
Margaret Barclay ◽  
Patrick M Dillon ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Outcome Data ◽  
Control Group ◽  
Care Clinic ◽  
Early Integration ◽  
Care Services ◽  
Patient Reported ◽  
Palliative Care Services

50 Background: Recent studies suggest that early integration of palliative care services into the care of patients with advanced cancer can improve end of life care. Unfortunately, there are insufficient resources for all advanced cancer to see palliative care from time of diagnosis. This 2012 CMS innovation award is attempting to improve identification of cancer patients in need of palliative care. Methods: In Year 1 of this award, increased staffing was added to existing palliative care resources to improve access. Patients were referred at discretion of their oncologist. A control group consisting of patients with similar diagnoses not referred to palliative care was identified including those without any contact with palliative care, and those who only saw palliative care in the hospitalization prior to death. Data regarding hospitalization in the last month of life, and hospice utilization was obtained. Results: Median time between referral to palliative care clinic and death was 72.5 days (mean 112). See table below. Conclusions: These data suggest patients referred to palliative care clinic within 3 months of death had benefits similar referral at time of diagnosis. However, many patients were never referred or referred only at the very end of life. The next phases of this award will utilize patient-reported outcome data to better identify those who need palliative care. Although most palliative care services are hospital-based, in this study, in-patient consultation only was too late to provide much benefit for these patients. Re-focusing scarce palliative care resources to the out-patient setting may have greater impact on patient care. [Table: see text]

Questions prompt lists used by palliative care teams help trigger discussions on prognosis and end-of-life issues with advanced cancer patients.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 12110-12110
Author(s):  
Carole Bouleuc ◽  
Alexis Burnod ◽  
Paul H. Cottu ◽  
Jean-Yves Pierga ◽  
Sylvie Dolbeault
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
P Value ◽  
Advanced Cancer Patients ◽  
Palliative Care Consultation ◽  
Palliative Care Teams ◽  
Life Issues ◽  
End Of Life Issues

12110 Background: Accuracy of prognosis perception is a key element to allow advanced cancer patients to make informed decisions and to reflect on their end-of-life priorities. This study aims to explore whether a question prompt list can promote discussions on prognosis and end-of-life issues during palliative care consultations for advanced cancer patients. Methods: In this multicentric randomised study, patients assigned in the interventional arm receive a question prompt list during the first palliative care consultation (T1) after referral by oncologists. The primary endpoint is the number of questions asked by patients during the second palliative care consultation (T2) one month later. Secondary objectives are anxiety and depression, quality-of-life, satisfaction with care, coping assessed at baseline (T1) and at two months (T3). Palliative care teams from 3 french comprehensive cancer centers participate in the study. Main inclusion criteria were adult patients with metastatic non-haematological cancer referred to the palliative care team and with an estimated life expectancy less than one year. Results: Patients (n = 71) in the QPL arm asked more questions (mean 21.8 versus 18.2, p-value = 0.03) during the palliative care consultations compared to patients in the control arm (n = 71). These questions addressed palliative care (mean 5.6 versus 3.7, p-value = 0.012) and end-of-life issues (mean 2.2 versus 1, p = 0.018) more frequently than in the control arm. At two months, compared to baseline, there was no change in anxio-depressive symptoms or quality of life. Conclusions: QPL favours discussion on prognosis and end-of-life care during the palliative care consultations for advanced cancer patients. Clinical trial information: NCT02854293 .

scholarly journals Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning

2016 ◽  
Vol 14 (6) ◽  
pp. 641-651 ◽  
Author(s):  
Debra K. Litzelman ◽  
Ann H. Cottingham ◽  
Wilma Griffin ◽  
Thomas S. Inui ◽  
Steven S. Ivy
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Communication Skills ◽  
Advance Care Planning ◽  
Hospice Care ◽  
Demonstration Project ◽  
Life Goals ◽  
Care Planning ◽  
Goals Of Care ◽  
Advance Care

AbstractObjective:Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life.Method:Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care.Results:Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice.Significance of Results:Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for “sustaining hope” (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

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