paywalled: Recording patient preferences for end-of-life care as an incentivized quality indicator: What do general practice staff think?

Recording patient preferences for end-of-life care as an incentivized quality indicator: What do general practice staff think?:

Introduction: Since April 2009, indicators for the UK Quality and Outcomes Framework pilot have been developed and piloted across a nationally representative sample of practices. In October 2009 a single palliative care indicator was piloted for 6 months that looked at, ‘the percentage of patients on the palliative care register who have a preferred place to receive end-of-life care documented in the records’.

Aim: The aim of this study was to gain the views and experiences of general practice staff on whether the inclusion of a single incentivized indicator to record the preferred place to receive end-of-life care would improve the quality of palliative care. Any issues arising from its implementation in a pay-for-performance scheme were also explored.

Methods: Interviews took place with 57 members of staff in 24 practices: 21 GPs, 16 practice managers, 12 nurses and eight others (mostly information technology experts).

Results: The indicator was not deemed appropriate for incentivization due to concerns about incentivizing an isolated, single issue within a multi-faceted, multi-disciplinary and complex topic. Palliative care was seen to be too sensitive and patient specific to be amenable to population-level quality measurement. In implementation, the indicator would pose potential harm to patients who may be asked about their end-of-life care at an inappropriate time and by a member of staff who may not be best placed to address this sensitive topic.

Conclusions: The most appropriate time to ask a patient about end-of-life care is subjective and patient specific and therefore does not lend itself to an inflexible single indicator. Focusing on one isolated question simplifies and distracts from a multi-faceted and complex issue and may lead to patient harm.

CancerWorld: Framing the argument over futile care - overdiagnose, overtreat, overpromise...media focus

Framing the argument over futile care:

We “overdiagnose, overtreat and overpromise”. This was the claim made by numerous newspaper headlines in response to the Lancet Oncology report last September on delivering affordable cancer care. While we do need open and frank discussions about how to curb the spiralling costs of cancer care, it was unfortunate that the media focused so heavily on the cost of futile treatment in the last weeks of life, blaming it all on a culture of excess. This sparked reports that patients would be denied potentially life-prolonging treatments purely on the basis of cost and generated fears that patients might be abandoned in their final months. There is no doubt that we do overtreat and overpromise in the advanced cancer setting. We know, for instance, that many patients receive cancer treatments in the last weeks of their life, and that some of these treatments have no reasonable chance of helping the patient and are associated with severe side-effects that can lead to hospitalisation and even death. We also know that receiving chemotherapy is associated with a delay in referral to palliative care. But blaming this on a culture of excess is too simplistic. Making the right decisions in later stages of advanced cancer is difficult for doctors and patients alike. It is often impossible to predict how long a patient will live, and while we have an increasing number of therapies to choose from, we don’t yet know enough about who stands to benefit and by how much. There can be a huge disconnect between the expectations of patients and families and those of clinicians, adding to the difficulty of conducting honest conversations with patients about their prognosis, treatment options and end-of-life preferences. There are no easy answers. But could we be making things harder for ourselves by posing options in terms of a choice between either fighting cancer or optimising quality of life? An emerging body of evidence shows that integrating palliative care into the mainstream care of cancer patients not only improves their quality of life, but might even help them live longer. Early involvement of palliative care specialists has also been shown to cut down on futile medical interventions and help families cope better with their loss of a loved one. ASCO is now recommending that patients should be offered concurrent palliative care and standard cancer treatments early in the course of their advanced cancer journey. This is in line with efforts to stimulate meaningful interaction between mainstream oncology and palliative care specialists that ESMO and other European professional bodies have been pursuing for some time. However, progress so far has been infuriatingly slow. Greater integration of palliative care requires changes in the way we organise care and train clinicians. We need to get on with this as a matter of urgency. If we fail to take a lead in addressing shortcomings in the way we care for patients with advanced cancer, the simplistic arguments about a wasteful culture of excess could win, and patients will be the losers.

paywalled: What Can We Learn About the Spiritual Needs of Palliative Care Patients From the Research Literature?

What Can We Learn About the Spiritual Needs of Palliative Care Patients From the Research Literature?

Context 
Spirituality is a distinctive subject within palliative care practice and literature, but research to date is relatively undeveloped in this field and studies often throw more light on conceptual and methodological issues than producing reliable data for clinical practice.

Objectives 
To determine what is known about the spiritual needs of palliative care patients from the evidence presented in published research.

Methods 
Specialist online databases were interrogated for primary empirical studies of patients with a chronic disease unresponsive to curative treatment. Studies that only used a proxy for the patient or reported expert opinion were excluded. Each study was critically appraised for quality and the strength of its evidence to determine if any data could be pooled.

Results 
Thirty-five studies were identified, equating to a total of 1374 patients.

End-of-life care: the neglected core business of medicine : The Lancet

End-of-life care: the neglected core business of medicine : The Lancet

Advanced cancer patients' self-assessed physical and emotional problems on admission and discharge from hospital general wards – a questionnaire study

Advanced cancer patients' self-assessed physical and emotional problems on admission and discharge from hospital general wards – a questionnaire study

 (2012) European Journal of Cancer Care

Most cancer patients receiving life-prolonging or palliative treatment are offered non-specialist palliative services. There is a lack of knowledge about their problem profile. The aim of this article is to describe the incidence of patient-reported physical and emotional problems on admission and discharge from general hospital wards and health staff's reported intervention.

A prospective study was undertaken over 12 months, where advanced cancer patients completed a patient questionnaire, EORTC QLQ C15-PAL, on admission (n= 97) and discharge (n= 46). The incidences of the problems were dichotomised in intensity categories. The average number of ‘clinically relevant problems’ on admission was 5 (SD 2) and on discharge 4 (SD 2).

A Wilcoxon signed rank test showed significant change in mean score for six out of nine problem areas, but the majority of the patients did not move to the lower intensity category. The highest concurrence was between patient-reported problems and reported intervention for physical function, pain, constipation and loss of appetite. Palliative cancer patients' self-reported problem profile on admission and discharge from hospital has not previously been described and the results indicate a need to focus on improvements to palliative services and for a special service for pain and constipation that could prevent some admissions.

Patterns of referral and knowledge of palliative radiotherapy in Alberta (and Northern Alberta and parts of British Columbia, Saskatchewan, the Northwest Territories, and Nunavut)

Patterns of referral and knowledge of palliative radiotherapy in Alberta [Can Fam Physician. 2012]

Abstract

OBJECTIVE:

To assess practitioners' referral patterns and knowledge of palliative radiotherapy (PRT).

DESIGN:

A 23-item questionnaire.

SETTING:

Northern Alberta and parts of British Columbia, Saskatchewan, the Northwest Territories, and Nunavut.

PARTICIPANTS:

A total of 1360 health practitioners, including primary care physicians and nurse clinicians in rural, remote, or far northern regions; FP-oncologists working in community cancer centres; palliative care (PC)specialists; and medical oncologists.

abstract: Survival Duration among Patients with a Noncancer Diagnosis Admitted to a Palliative Care Unit: A Retrospective Study

Abstract 

Background: 

Palliative care unit (PCU) beds are a limited resource in Canada, so PCU admission is restricted to patients with a short prognosis. Anecdotally, PCUs further restrict admission of patients with noncancer diagnoses out of fear that they will "oversurvive" and reduce bed availability. This raises concerns that noncancer patients have unequal access to PCU resources.

Purpose/Methods: 

To clarify survival duration of patients with a noncancer diagnosis, we conducted a retrospective review of all admissions to four PCUs in Toronto, Canada, over a 1-year period. We measured associations between demographic data, prognosis, Palliative Performance Score (PPS), length of stay (LOS), and waiting time.

Results: 

We collected data for 1000 patients, of whom 21% had noncancer diagnoses. Noncancer patients were older, with shorter prognoses and lower PPS scores on admission. Noncancer patients had shorter LOS (14 versus 24, p<0.001) than cancer patients and a similar likelihood of being discharged alive to cancer patients. Noncancer patients had a trend to lower LOS across a broad range of demographic, diagnostic, prognostic, and PPS categories. Multivariable analysis showed that LOS was not associated with the diagnosis of cancer (p=0.36).

Discussion/Conclusion:
Noncancer patients have a shorter LOS than cancer patients and a similar likelihood of being discharged alive from a PCU than cancer patients, and the diagnosis of cancer did not correlate with survival in our study population. Our findings demonstrate that noncancer patients are not "oversurviving," and that referring physicians and PCUs should not reject or restrict noncancer referrals out of concern that these patients are having a detrimental impact on PCU bed availability.

open access: JCO Editorial: Palliative Sedation: When and How?

 Palliative Sedation: When and How?

".....As with many other medical interventions, the controversy that
surrounds palliative sedation is not linked to the question of “yes or
no?” but rather, “when and how?”"

abstract: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

Abstract

Purpose 

An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. 

Clinical Context 

Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available.

abstract: Palliative Chemotherapy for Malignant Ascites Secondary to Ovarian Cancer

Am J Hosp Palliat Care. 2012

Palliative Chemotherapy for Malignant Ascites Secondary to Ovarian Cancer.

Source

College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL, USA.

Abstract

Although research has shown that palliative chemotherapy is beneficial compared to lack of treatment (Schorge JO, Schaffer JI, Halvorson LM, et al. ed. Williams Gynecology. New York, NY: McGraw Hill Medical; 2008.), other studies show aggressive end-of-life treatment adversely affects quality of life and shortens life span (Arriba L, Fader A, Frasure H, von Gruenigen V. A review of issues surrounding quality of life among women with ovarian cancer. Gynecol Oncol. 2010;119(2):390-396.).

Without a consensus on palliative chemotherapy, underutilization during end of life prevails, and likely will continue without additional research (Barbera L, Elit L, Krzyzanowska M, et al. End of life care for women with gynecologic cancers. Gynecol Oncol. 2010;118(2):196-201.).

This article aims to evaluate and examine existing chemotherapy for palliation of malignant ascites secondary to ovarian cancer and compare commonly used regimens. Agents will be evaluated by their modes of administration. Oral agents include cyclophosphamide and thalidomide, and intraperitoneal vehicles include taxane-based agents, platinum-based agents, antibiotics, and biologic agents. In addition, cost, ethics, and quality of life discussions factor into this review.

Palliative care's goal is to find a balance between life expectancy and symptom relief with minimal adverse effects.

abstract: Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life

Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life


Purpose
Quality in cancer care is an issue that has come to the forefront over the past decade. Although the American Society of Clinical Oncology has developed extensive quality metrics and goals, such as limiting chemotherapy being provided within the last 14 days of a patient's life, there are no similar quality metrics, and few data, in the field of radiation oncology.


Methods
In this study, morbidity and mortality records from 2008 to 2011 were reviewed for patients at Indiana University who received radiation therapy (RT) within 30 days of death; 63 patients met those criteria.


Results
Analysis showed that 22.2% of patients had Karnofsky Performance Status Scale scores >80, whereas 66.7% of patients had scores < 60. Just over half of patients (52%) were still on treatment at death, and more than half of patients (54%) had completed less than half of their original RT plans. Six patients had their final treatments on the days of their deaths, and another 43 patients had their last treatments within 10 days of death. Forty-eight percent of patients received RT for less than one-fifth of their final month of life and 21% for more than half of their last month alive.


Conclusions
These data are valuable in ongoing discussions of RT use at the end of life, especially as related to hospice underutilization.

abstract: Palliative Care Consultation Service and Palliative Care Unit: Why Do We Need Both?

Background. Palliative care (PC) infrastructure has developed differently around the globe. Whereas some institutions consider the palliative care unit (PCU) a valuable component, others report that the sole provision of a state-of-the art palliative care consultation service (PCCS) suffices to adequately care for the severely ill and dying.

Objective. To aid institutional planning, this study aimed at gathering patient data to distinguish assignments of a concomitantly run PCU and PCCS at a large hospital and academic medical center.

Conclusion. This study presents a direct comparison between patients in a PCU and a PCCS. Results strongly support the hypothesis that the coexistence of both institutions in one hospital contributes to the goal of ensuring optimal high-quality PC for patients in complex and challenging clinical situations.

"Limitations

Though this is the first study providing the information discussed
above, some limitations have to be considered.

1. Satisfaction of the PC team with patient care is a surrogate
measure. We were unable to provide patient-reported outcomes,
which should be the gold standard when assessing
the quality of PC services [41]. Moreover, the validity of a
one-item five-point grading scale is considerably restricted,
and the findings may be influenced by other circumstances
such as a lack of confidence in the PCCS team outside their
own institution. ....."

Karolinska Institutet - Complexities in caregiving at the end of life (re: PLOS study)

"...The study indicates three key areas that are sometimes overlooked in palliative care, namely bodily care and contact, a secure, aesthetic and comfortable environment, and death-related rituals.
“The caregivers described different kinds of communication with patients and relatives, from the giving of advice to communication through non-verbal, physical contact,” says Dr Lindqvist. “Rituals surrounding dying and death were not only spiritual or religious but also more subtly existential, legal and professional. One field that has been largely ignored by research is sensory aspects of the caring environment, both at home and in in-patient settings.”
The study also shows that non-pharmacological palliative care is based on a number of complex and sophisticated decisions on the part of the caregiver regarding not only what can be done or should not be done, but also when, how and why to whom. This differs from the traditional understanding of non-pharmacological palliative care as ‘basic’...."

open access: PLoS Medicine: Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study including Editorial Summary

including:

Editors' Summary Top

Background

End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.

Why Was This Study Done?

There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.

What Did the Researchers Do and Find?

End-of-life care is complex but aims to provide care and comfort

"...They add: "This adaptation is accomplished by using knowledge about and respect for the person as an individual with a life history lived in a particular context, that is the person is not viewed only as a dying patient.""

Editorial: Full-text - For a Modern Concept of Palliative Care

"Unfortunately, in most countries hospice care addresses end-of-life care."

"....This late referral to palliative care is also in contrast with the classical definition of palliative care provided by WHO: “Palliative care is ….. applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” [6]. "

abstract: Palliative Medicine Fellowship: A Study of Resident Choices

Context

There are no data on the motives or characteristics of physicians choosing fellowship training in Hospice and Palliative Medicine (HPM).

Objectives

To understand more about the residents who choose HPM and what leads them to this decision.

Conclusion

Negative experiences with end-of-life care in residency, particularly in the intensive care unit, continue to be a factor in selection of HPM as a specialty. Many residents make their decision to enter the field and apply during Postgraduate Year 3. Most received negative comments about the choice. Fellows require a broad range of experience when selecting a fellowship program.

JCO - open access - It Takes a Village (palliative care and end of life decisions - worth reading)

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

Clinical Context
"Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness......

abstract: A survey of gynecologic oncologists regarding the End-of-Life discussion: A pilot study

Results.

Response rate was 12.8%.

 Highlights

► A survey was sent to 1105 gynecologic oncologists to evaluate practices and attitudes regarding the end-of-life discussion
► This discussion appears to be had late
► This may contribute to patients' inability to effectively take part in her plan of care