Spiritual issues in palliative care consultations in the Netherlands

INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was analysed for a two-year period. RESULTS: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. DISCUSSION: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.     

The first 2 years of a palliative care consultation team in the Netherlands

In January 1999 an integrated multidisciplinary palliative care consultation (PCC) team was established in Maastricht in the Netherlands. The team included experts in palliative care who had extensive experience in a variety of settings. One of the major tasks of the PCC team was to give support, information and advice to healthcare professionals caring for terminally ill patients. The PCC team was asked by the government to consecutively register and evaluate all consultations. This article describes these consultations, including information on the requesting caregivers, the patients, the questions asked and the recommendations given in the first 26 months. The results show that the PCC team served the needs of professional caregivers in a variety of settings. Most consultations concerned physical and pharmacological problems and the majority of recommendations were evaluated as positive.     

Requests from professional care providers for consultation with palliative care consultation teams

Goals of work Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care.Methods As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care.Main results Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables.Conclusions The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.     

Problems experienced by the informal caregivers of cancer patients and their needs for support

Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.     

Discharge planning for palliative care patients: a qualitative analysis

For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.     

The impact of the palliative care mobile team on symptom assessment and medication profiles in patients admitted to a comprehensive cancer center

Goals of work In recent years, tertiary care hospitals and cancer centers have shown great interest in forming palliative care consultation teams. Thus, these centers may be interested in the types of care that such teams give, which could help the other centers put together their own teams. However, the availability of such information is limited. The purpose of our study was therefore to describe the experience of a palliative care team at our comprehensive cancer center. Materials and methods We reviewed the medical records of 100 consecutive patients who were referred to our palliative care mobile team between November 2004 and January 2005; we then analyzed the primary interventions of this team. Results The median patient age was 61 years; 57 patients were female. The most frequent symptoms were fatigue in 78% and pain in 62% of patients. The main interventions by the palliative team were changes in medication types (opioids, antiemetics, neuroleptics, and laxatives) and in medication doses. Conclusions Palliative care mobile teams make multiple changes in previous medications and provide almost universal counseling services to patients and families. The length of involvement with the patient and family is short; therefore, rapid stabilization and counseling are required. Our findings regarding medication changes could be helpful to tertiary care hospitals and cancer centers considering palliative care consultation teams.     

A model of palliative care: the palliative medicine program of the Cleveland Clinic Foundation

 Patients with advanced diseases, both cancer and noncancer, experience high symptom prevalence and psychosocial distress. Multiple unmet needs in the physical, psychosocial and spiritual domains are common. In the United States, palliative medicine is an emerging discipline that focuses on meeting these needs to achieve optimal quality of life for the patient–family unit. The majority of palliative care programs in the U.S. are consultation based. In contrast, the Palliative Medicine Program of the Cleveland Clinic Foundation offers multidisciplinary, comprehensive care from a primary or a consultative focus. The program has clinical, research, and educational components. Established as a consultation service in 1987, the clinical component now includes inpatient and outpatient consultation services, a dedicated acute care inpatient hospital unit, outpatient palliative medicine and cancer pain clinics, palliative home care, hospice home care and hospice residential care. Over 800 new patient consultations took place in 1997. In this paper, development of the program and its structure are described. Challenges to effective communication in a large program within a tertiary care institution are discussed, and strategies designed to meet these challenges are presented. Published online: 29 May 2000     

Palliative treatment alternatives and euthanasia consultations: a qualitative interview study

Context

There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant.

Objectives

To investigate 1) whether and how palliative treatment alternatives come up during or preceding euthanasia consultations and 2) how the availability of possible palliative treatment alternatives are assessed by the independent consultant.

Methods

We interviewed 14 euthanasia consultants and 12 physicians who had requested a euthanasia consultation. We transcribed and analyzed the interviews and held consensus meetings about the interpretation.

Results

Treating physicians generally discuss the whole range of treatment options with the patient before the euthanasia consultation. Consultants actively start thinking about and proposing palliative treatment alternatives after consultations, when they have concluded that the criteria for careful practice have not been met. During the consultation, they take into account various aspects while assessing the criterion concerning the availability of reasonable alternatives, and they clearly distinguish between euthanasia and continuous deep sedation. Most consultants said that it was necessary to verify which forms of palliative care had previously been discussed. Advice concerning palliative care seemed to be related to the timing of the consultation (“early” or “late”). Euthanasia consultants were sometimes unsure whether or not to advise about palliative care, considering it not their task or inappropriate in view of the previous discussions.

Conclusion

Two different roles of a euthanasia consultant were identified: a limited one, restricted to the evaluation of the criteria for careful practice, and a broad one, extended to actively providing advice about palliative care. Further medical and ethical debate is needed to determine consultants’ most appropriate role.     

Clinical and economic impact of palliative care consultation

Palliative care consultation is the most common model of hospital-based services in the United States, but few studies examine the impact of this model. In a prospective study, we describe the impact of palliative care consultation on symptoms, treatment, and hospital costs. Patients receiving interdisciplinary palliative care consultations from 2002 to 2004 were approached for enrollment; 304 of 395 (77%) patients participated. Measures included diagnosis, treatment decisions, and symptom scores. To test impact on costs, a one-year subset of cases with lengths of stay >4 days (n=104) was compared to all available controls (n=1,813) matched on the 3Mtrade mark All Patients Refined Diagnosis Related Group, Version 20, and mortality risk scores. Half of the patients were younger than 65 years, 28% were African American, and 61% had cancer. Median Palliative Performance score was 20 (range, 10-100). Recommendations were implemented in 88% of cases; new "do not resuscitate/do not intubate" orders were written for 34% of patients, new comfort care orders for 44%, and 27% were referred for hospice care. Symptom scores improved from Day 1 to Day 3, with greatest improvement in pain (2.6-1.4, P<0.001). Compared to matched controls without palliative care consultation, palliative care cases had lower cost per day ($897 vs. $1004, P=0.03). Per diem variable costs were 10.7% less for all palliative care cases and 20.5% less for those with >50% hospital days with palliative care consultation. Palliative care consultation is followed by decisions to forego costly treatment and improved symptom scores, and earlier palliative care intervention results in greater cost-savings.     

Pre-Ventricular Assist Device Palliative Care Consultation: A Qualitative Analysis

Introduction

In 2013, the Centers for Medicare and Medicaid Services issued a mandate requiring that all patients undergoing destination therapy ventricular assist device (DT VAD) implantation have access to a palliative care team before surgery. Subsequently, many VAD programs implemented a mandatory preimplantation palliative care consultation for patients considering DT VAD. However, little is known about the quality of these consults.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.     

Does palliative care improve quality? A survey of bereaved family members

Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.     

Advanced cancer at home: caregiving and bereavement

BACKGROUND: The advanced and terminal phases of cancer are being increasingly treated at home with the aid of palliative care teams. It is well known that caregivers are overburdened emotionally, financially and physically, and some studies have demonstrated that this overload extends beyond the period of mourning. Identifying caregivers at risk of bereavement maladjustment is a useful means of ensuring prompt psychological and social assistance, and optimising the available resources. METHODS: One hundred and eleven caregivers of home-treated patients with advanced/terminal cancer were recruited by the palliative care unit operating in their place of residence. After giving their informed consent, all of the caregivers were asked to complete questionnaires designed to evaluate various emotional, financial and social aspects. Three, six and 12 months after the decease of their patients, the caregivers were contacted again and asked to complete other questionnaires aimed at assessing their emotional reactions and bereavement-related problems. RESULTS: The 12-month follow-up was completed by 93 caregivers. Their bereavement maladjustment problems correlated with their perception of emotional distress and the caregiving-related problems detected at the time of referral, particularly among females. Spouses, subjects aged over 61 years and those perceiving a substantial emotional burden proved to be at greater long-term risk. CONCLUSIONS: The identification of overburdened caregivers and those at risk of long-term bereavement maladjustment may facilitate the programming of ad hoc interventions that could reduce inherent health and social costs. Palliative care teams can usefully include someone to identify such caregivers by means of inexpensive and objectively predictive instruments.     

The palliative care interdisciplinary team: where is the community pharmacist?

Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.     

Pain relief and palliative care in Hong Kong

Palliative care started in Hong Kong in 1982. It gradually established an increasingly important role in cancer care. Hong Kong is fortunate because analgesic drugs and expertise from various disciplines and specialties in pain management are readily available. A holistic approach to pain management has been adopted; various dimensions of pain are assessed and managed, and outcomes evaluated. Despite efforts in public education, patient-related barriers to pain management still exist, and it is important that misconceptions of patients be corrected. To promote the quality of palliative care and pain management, efforts have been made to provide training of healthcare professionals, and on formation of professional societies for palliative care doctors and nurses. In Hong Kong, palliative medicine achieved medical specialty status in 1998, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve palliative care and pain management in Hong Kong through the formation of consultative teams in general hospitals, enhanced liaison with nursing homes, and possibly by redefining the role of traditional Chinese medicine in pain management.     

Pain Relief and Palliative Care in Hong Kong

Palliative care started in Hong Kong in 1982. It gradually established an increasingly important role in cancer care. Hong Kong is fortunate because analgesic drugs and expertise from various disciplines and specialties in pain management are readily available. A holistic approach to pain management has been adopted; various dimensions of pain are assessed and managed, and outcomes evaluated. Despite efforts in public education, patient-related barriers to pain management still exist, and it is important that misconceptions of patients be corrected. To promote the quality of palliative care and pain management, efforts have been made to provide training of healthcare professionals, and on formation of professional societies for palliative care doctors and nurses. In Hong Kong, palliative medicine achieved medical specialty status in 1998, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve palliative care and pain management in Hong Kong through the formation of consultative teams in general hospitals, enhanced liaison with nursing homes, and possibly by redefining the role of traditional Chinese medicine in pain management.     

Team type,team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study

ABSTRACT

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.     

Use of a physician consultant in a primary care nursing practice

This article describes a study of the nature of consultation requests made to a physician consultant by nurse practitioners in an urban university-affiliated ambulatory nursing practice. During a 50-week period, 1,504 client encounters resulted in 225 consultations, an average consultation rate of 15 percent. The types of consultation requests, the medical specialty to which the content of the request related and the outcomes of the consultations were recorded in a consultation log. Knowledge of the pattern and nature of consultation needs has multiple benefits. Careful study of practice needs may assist in determining the qualifications of a prospective consultant and the amount of time required for on-site consultation. Such a study may provide insight into the types of problems seen in the practice and identify areas of need for continuing education and protocol development. The consultation process enhances continuity of care, while knowledge of practice needs for consultation may lead to more efficient, cost-effective health care.