Palliative Medicine current issue

Palliative sedation: welcome guidance on a controversial issue

Hauser, K., Walsh, D. — Mon, 26 Oct 2009 09:39:38 PDT

European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care

Mon, 26 Oct 2009 09:39:38 PDT

The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review.

What do patients with brain metastases from non-small cell lung cancer want from their treatment?

Dorman, S., Hayes, J., Pease, N. — Mon, 26 Oct 2009 09:39:38 PDT

Brain metastases are a common complication of non-small cell lung cancer (NSCLC). Prognosis is poor and the effectiveness of whole brain radiotherapy (WBRT) is uncertain for patients with moderate performance status. Studies on WBRT effectiveness have thus far used outcome measures, such as survival, performance status and cognitive function. The aim of this study was to study what patients with recently diagnosed brain metastases from NSCLC want from their treatment. We carried out semistructured interviews with nine patients with brain metastases from NSCLC, for whom the benefit of WBRT is uncertain. Interpretative phenomenological analysis was used. Themes identified included quality versus quantity of life, factors contributing to quality of life (including family, mobility and normality), ‘Go for it!’ — the desire to try anything, the desire for a cure or ‘magic wand’, fear and other factors (including family in decision making, information or lack of information, relationship with professionals, experience of steroids and radiotherapy including adverse effects). Quality of life is important to patients, but many are keen to try any treatment which might prolong their life. Understanding patients’ values regarding treatment and goals of treatment can help clinicians discuss these issues with patients and provide appropriate information and can aid selection of appropriate outcome measures.

Improving training in spiritual care: a qualitative study exploring patient perceptions of professional educational requirements

Yardley, S., Walshe, C., Parr, A. — Mon, 26 Oct 2009 09:39:38 PDT

Healthcare professionals express difficulties in delivering spiritual care, despite it being a core component of palliative care national policies. The patient perspective on professional training to address difficulties has not previously been sought. The aim of this study is to describe patient suggestions for development of training to deliver spiritual care. Qualitative semi-structured in-depth ‘palliative patient’ interviews (n = 20) were analysed thematically. Training suggestions encompassed practical care delivery. Patients supported staff who introduced questions about spiritual needs, and they expected opportunities to engage in spiritual care discussions. The ‘right’ attitude for spiritual care delivery was defined as being non-judgemental, providing integrated care and showing interest in individuals. Training issues included patient perspectives of boundaries between personal and professional roles. This study provides ‘palliative patient’ perspectives to strengthen recommended models of spiritual care delivery. It shows that user opinions on training can be helpful not only in deciding objectives but also how to achieve them.

Physician factors associated with outpatient palliative care referral

Ahluwalia, S., Fried, T. — Mon, 26 Oct 2009 09:39:38 PDT

Outpatient palliative care can provide significant benefits to seriously ill patients, but several barriers to appropriate referrals remain. No study has examined the physician factors associated with referral to outpatient palliative care. To determine physician factors, with a focus on physician beliefs, associated with referral to palliative care. Cross-sectional study of 170 primary care physicians at Kaiser Permanente (KP), a large non-profit Health Maintenance Organisation (HMO), using a self-administered questionnaire. Of the 145 respondents, 100 (70%) reported referring any patients to the palliative care program in the prior year, with a median of 3 referrals (interquartile range 2, 6). Factors associated with referral included working at KP between 10 and 20 years as compared to <10 years [Odds ratio [OR] 6.29 (95% confidence interval [CI] 1.38, 28.6)] and having personal experience with palliative care [OR 2.13 (95% CI 0.95, 4.976)]. None of the beliefs scales was associated with referral. Physician characteristics other than their beliefs about palliative care played a significant role in determining referral. Palliative care programs should aim to increase their visibility in the outpatient setting to increase referrals by primary care physicians. Tools that help physicians identify seriously ill patients who could benefit from palliative care may also serve to increase appropriate referrals.

End-of-life care in hospital: a descriptive study of all inpatient deaths in 1 year

Abel, J., Rich, A., Griffin, T., Purdy, S. — Mon, 26 Oct 2009 09:39:38 PDT

The objectives of this study are to ascertain how many patients who died in a district general hospital in England might have been able to be cared for at home, to obtain the cost of each inpatient stay, to make an estimate of the maximum resource implications of care packages for these patients, and to calculate the savings in hospital admissions that could be used for the development of community services. These objectives are dependant on full implementation of the End of Life Strategy. A descriptive study of all inpatient deaths in one year in a district general hospital in the south west of England was conducted. Data collection — case notes of all patients who died at the hospital from the beginning of June 2006 to end of May 2007. A total of 599 case notes of 627 patients who died in the study period were reviewed. A total of 331 patients (56%) were not assessed as being in the last year of life. Of the remaining 44%, 152 (26%) were clearly in the last year of life and 110 (18%) had significant co-morbidities and could probably have been recognised as being in the last year of life. A total of 399 (67%) of patients were appropriately admitted to hospital for their final illness, 194 (33%) could have been looked after at home. At least 119 (20%) clearly and 75 (13%) probably could have stayed at home. The mean cost of admission was £3173 per patient. A total of 77 (13%) of patients were admitted from nursing homes and 53 (69%) of these could have stayed in the nursing home to die. A total of 44% of all patients who died within the district general hospital had chronic life threatening illnesses. A maximum of one third of all hospital deaths could have been looked after at home if excellent end of life services were in place. When commissioning end of life care services, it is possible to calculate how many extra patients may need community care packages and the cost that could be redistributed from hospital to community for these services.

Prioritising drugs for single patient (n-of-1) trials in palliative care

Mon, 26 Oct 2009 09:39:38 PDT

Many of the drugs prescribed commonly to palliative care patients have potentially significant side-effects and are of unproven benefit. The acquisition of evidence to support the prescribing of these drugs has been very slow. Single patient trials (SPTs) (also known as n-of-1 trials) offer a potential means of obtaining the evidence necessary to support or refute the use of several of the drugs and interventions whose use is currently based on physician experience or anecdote alone. A list of SPTs considered "most urgent", for commonly employed treatments and for the most common and most troublesome symptoms in palliative care is presented. These are drugs for which the gap between evidence and practice is greatest, where the evidence of efficacy is most lacking, where significant side effects potentially lead to the greatest morbidity, or where cost is a major patient burden. Although not all the drugs used in palliative care are suitable, SPTs provide a potential alternative method of gathering evidence in palliative care.

Clinical findings and recommendations made during home visits by a palliative care specialist physician

Bush, S., Wearne, H., Reilly, P., Chacko, R, Palmer, J. — Mon, 26 Oct 2009 09:39:38 PDT

Little has been reported regarding the nature of home visits by palliative care specialist physicians to assist in the management of complex cases. We determined the characteristics, actionable clinical findings and recommendations made during consecutive home visits conducted by a specialist physician for patients registered with a community palliative care service. Patient demographic information and clinical records were reviewed. Ninety-one patients received a total of 104 home and residential facility visits. Median patient age was 59 (Q1—Q3, 43—72). Ten children (under the age of 14) received a total of 15 visits. Seventy-three patients (80%) had a cancer diagnosis. Median visit duration was 60 min (Q1—Q3, 45—60). The major actionable clinical findings were pain (120), gastrointestinal (115), neuropsychiatric (58), mouth and skin (33) and respiratory (29). One-third of recommendations involved changes in analgesia regimen (opioids 67, adjuvants 44). The specialist physician home visit resulted in multiple patient care recommendations. This information may help palliative care programmes improve their care for patients and families in the community.

Barriers to advance care planning in chronic obstructive pulmonary disease

Mon, 26 Oct 2009 09:39:38 PDT

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of ‘end of life’ within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy’s recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of ‘continuous palliation’.

Nurses' attitudes towards end-of-life decisions in medical practice: a nationwide study in Flanders, Belgium

Inghelbrecht, E., Bilsen, J., Mortier, F., Deliens, L. — Mon, 26 Oct 2009 09:39:38 PDT

We investigated on a nationwide level the attitudes of nurses towards end-of-life decisions (ELDs) that may hasten death and towards their role in those decisions. We took a representative random sample of 6000 nurses in Flanders, Belgium. Response rate was 62.5%. Most nurses agreed with the practice of withholding/withdrawing potentially life-prolonging treatments (93%), with decisions to alleviate symptoms with possible life-shortening side effects (96%) and with the practice of euthanasia (92%). Their support for the different decisions existed regardless of whether they had cared for terminally ill patients or not. Most nurses also thought that they have an important role to play especially in the ELD-making process. Nurses’ views on their proper role in the administration of drugs in euthanasia and continuous deep sedation showed a large dispersal. Overall, nurses’ work setting determines their opinions on nurses’ role in ELDs. In conclusion, nurses accept a wide variety of ELDs being practiced with terminally ill patients.

Reliability and validity of Japanese version of the McGill Quality of Life Questionnaire assessed by application in palliative care wards

Tsujikawa, M., Yokoyama, K., Urakawa, K., Onishi, K. — Mon, 26 Oct 2009 09:39:38 PDT

The McGill Quality of Life Questionnaire (MQOL), which consists of 16 items constructing physical, psychological, existential and support subscales and one item of overall quality of life (QOL), has been developed to assess QOL of terminal cancer patients. To examine if MQOL Japanese version (MQOL-J) is applicable, it was administered to 83 terminal cancer patients in palliative care wards several days after admission and then 7 to 10 days after the first interview. Cronbach’s coefficient for four subscales was 0.584—0.860. Sixteen items were classified into four factors by factor analysis, similar to the original English version. The results indicated that psychological and existential domains of the MQOL-J significantly related to overall QOL. Existential and support domains as well as overall QOL were significantly improved between the first and second interviews, although performance status assessed by Eastern Cooperative Oncology Group worsened. It is suggested that MQOL-J can reflect perceived health status of terminal cancer patients.

Adverse events arising from a palliative care survey

Mon, 26 Oct 2009 09:39:38 PDT

Development of evidence-based practice requires investigation of the attitudes and needs of patients, families and healthcare professionals, particularly for sensitive subject areas. Cystic fibrosis (CF) is a recessively inherited life-limiting disorder resulting in early death. Patients with this condition generally expect that lung transplantation will be an available treatment option; however, this is uncertain. A dual approach to care that involves both preparing patients for transplant assessment, while simultaneously exploring acceptable palliative care options is needed. A survey amongst patients with CF, their families and health carers was conducted to understand their attitudes and needs in relation to end-of-life care. The survey encompassed five separate domains, with a total of 60 questions requiring approximately 20 min to complete. Of the 200 surveys sent to patients, 82 (41%) completed responses were received. The Institutional Ethics Committee received six complaints from families of seven patients (3.5% of those surveyed). This article explores the nature of the adverse responses to the survey. The majority of complaints were received from family members rather than from patients. Complaints described dissatisfaction with the topic, little warning about the study and felt it to be inappropriate for their family member’s level of health. Survey instruments used to determine attitudes and needs in relation to end-of-life patient care are likely to elicit adverse responses that should be reported in a similar way to other investigational studies. Also arising from adverse responses and the complaint process, is the impact of criticism on study researchers.

Can ketamine prescribed for pain cause damage to the urinary tract?

Storr, T., Quibell, R. — Mon, 26 Oct 2009 09:39:38 PDT

Presentation of three palliative care patients who were given ketamine as an analgesic and subsequently developed significant and debilitating urological symptoms. In one patient there was resolution of symptoms following cessation of ketamine, but some symptoms persisted until death in the other two. Possible mechanisms for damage to the urothelium by ketamine are suggested.

Reporting end-of-life practice: can we trust doctors to be honest?

Draper, H., Ives, J., Pall, H., Smith, S., Damery, S., Wilson, S. — Mon, 26 Oct 2009 09:39:38 PDT