Palliative Care Doctors Research Articles

A discourse analysis of difficult clinical situations in relation to nutrition and hydration during end of life care

The following discussion builds upon a previous publication that reported on the perceptions and discourses of palliative care nurses and doctors in relation to nutrition and hydration at the end of life. The aim of this paper is to report the discourses of nurses and doctors in relation to the challenges they faced when managing the care of patients with severe brain injury vs. the clearer cut situations when caring for terminally ill patients with cancer. The objectives of the study were to: explore the tensions in the discourses during end of life care, explore the challenges regarding nutrition and hydration at the end of life. The decision to withdraw life support seems to be made more readily than the decision to withdraw nutrition and hydration at the end of life. The abatement of nutrition and hydration during the terminal phase of life is a controversial issue for a range reasons. Indeed, whilst it is accepted practice in the palliative care setting, nurses and doctors often struggle with the idea. The design for this study used discourse analysis framed by a post structural framework. Focus groups were conducted with nurses working in palliative care units. Single interviews were conducted with doctors from a tertiary palliative care unit. The findings revealed contesting discourses involving quality of life and the prolongation of life. The provision of food and fluid has profound emotional and social meanings for patients and families. The study reported here examined these issues with health professionals. The findings point to the challenges and tensions faced by health professionals in relation to decision making and medical hydration during end of life care. The concern is that tensions arise when decisions need to be made and how best to make these. The contesting discourses for nurses and doctors when nutrition and hydration is ceased involve maintaining quality of life vs. the prolongation of life. Medical and nursing staff have different attitudes and beliefs towards end of life care. Tensions arise when decisions need to be made based on quality of life or prolongation of life. The successful merging of curative and palliative care is not without challenges. There has been little exploration of this situation.

Perception of Nerve Block Treatment among Palliative Care Doctors: An Analysis on Survey Results

がんの疼痛緩和において, WHO推奨の薬物療法に加えて, 神経ブロック治療の併用は, 疼痛緩和やQOL向上に有用であるという報告が散見される. そこで, がん疼痛に対する神経ブロック治療の有用性などについて, 緩和医療領域でオピニオンリーダーに相当すると考えられる医師にアンケート調査を施行し現状と今後の問題点を検討した. その結果, 薬物療法を行ったうえで神経ブロックを考慮するとの回答が30％であり, くも膜下または硬膜外持続注入法を高く評価しており, 麻酔科医に期待が寄せられていた. 今後, 神経ブロック治療の適応などについて, 麻酔科医が積極的に他科の医師を啓蒙していく必要性がうかがえた.

How do-not-resuscitate orders are utilized in cancer patients: Timing relative to death and communication-training implications

End-of-life communication is crucial because most U.S. hospitals implement cardiopulmonary resuscitation (CPR) in the absence of do-not-resuscitate directives (DNRs). Despite this, there is little DNR utilization data to guide the design of communication-training programs. The objective of this study was to determine DNR utilization patterns and whether their use is increasing. A retrospective database analysis (2000-2005) of DNR data for 206,437 patients, the entire patient population at Memorial Sloan-Kettering Cancer Center (MSKCC), was performed. The hospital recorded, on average, 4,167 deaths/year. In 2005, 86% of inpatient deaths had a DNR, a 3% increase since 2000 (p < .01). For patients who died outside the institution (e.g., hospice), 52% had a DNR, a 24% increase over 6 years (p < .00001). Adult inpatients signed 53% of DNRs but 34% were signed by surrogates. The median time between signing and death was 0 days, that is, the day of death. Only 5.5% of inpatient deaths had previously signed an outpatient DNR. Here, the median time between signing and death was 30 days. Although DNR directives are commonly utilized and their use has increased significantly over the past 6 years, most cancer patients/surrogates sign the directives on the day of death. The proximity between signing and death may be a marker of delayed end-of-life palliative care and suboptimal doctor-patient communication. These data underscore the importance of communication-training research tailored to improve end-of-life decision making.

Palliative care professionals’ perceptions of nutrition and hydration at the end of life

The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue.

Wound Care in Advanced Illness: Application of Palliative Care Principles

1159 EVEN THOUGH Alvarez et al.1 defines palliative wound care as “the incorporation of strategies that prioritize symptomatic relief and wound improvement ahead of wound healing,” their review article illustrates that these two goals are not mutually exclusive. The paper points out that these strategies intended to provide comfort also lead to healing even in the context of advanced disease. In fact, good palliation, by improving patient care, increases the likelihood of healing the wound. The goals of palliative wound care promote wound healing: controlling pain, managing infection, odor, bleeding, and exudate, and maintaining a good quality of life for the patient and caregiver.2 First, improving mobility is central to preventing/treating pressure ulcers. A primary reason for the lack of mobility, however, is pain. Good pain management improves mobility and thus can lead to decreased pressure on the ulcer, increasing the opportunity for healing.3 Second, management of the infection that causes the odor and exudates is also one of the fundamental tenets to healing a pressure ulcer.4 Third, recent data suggest a relationship between wound healing and psychosocial factors. For example, a national pressure ulcer study showed that administration of an antidepressant correlates positively to pressure ulcer healing.5 Finally, treating the family and caregivers is an integral part of treating the chronic wound.6 Assisting and supporting the caregiver who does the dressing changes improves the wound care. On the flip side of the same coin, curative measures may provide the best palliation for a wound that impairs quality of life. Restoring the blood flow through balloon angioplasty not only provides wound healing but also improves the patients’ pain while salvaging the limb.7 Medicated compression wraps for venous stasis ulcers serve a dual purpose of palliating the discomfort and drainage from the wound and promote healing. Our communication to patients and families should reflect our understanding of this dual purpose of wound management in palliative care. Just as we speak about “hoping for the best and planning for the worse” when breaking bad news,8 so we ought to speak of treatment of the wound as an integration of palliative and curative modalities. The goal is to decrease the burden of the wound, while simultaneously hoping that the interventions will promote healing. Discussion using such a parallel mindset avoids unrealistic expectations. Such unrealistically high expectations may be the reason why pressure ulcers are the number one cause of lawsuits against facilities.9 Effective communication may decrease these lawsuits.10 Like palliative care, wound care is a growing field in which evidence about effective treatments is just beginning to accumulate. As palliative care doctors, we look forward to learning more about how we can integrate this information into our therapeutic arsenal.

Psychological morbidity and burnout in palliative care doctors in Western Australia

Medicine and particularly palliative care are considered to be stressful professions, with risks of psychological morbidity and burnout. There is little published work quantitatively documenting their prevalence among medical practitioners practising in palliative care. Three questionnaires, including the General Health Questionnaire (GHQ-12) and the Maslach Burnout Inventory, were sent to palliative care practitioners in Western Australia. Forty-one of 43 (95%) practitioners completed the questionnaires. The mean score on the GHQ-12 was 1.9 (range 0-8), with 11 (27%) scoring 4 or more. On the Maslach Burnout Inventory, mean scores on the emotional exhaustion (EE, mean 17.5, range 1-47) and depersonalization subscales (DP, 4.5, 0-24) fell within the low range, with scores for personal accomplishment (39, 32-46) falling within the average range. Ten respondents (24%) scored high on either the EE subscale or the DP subscale, meeting criteria for burnout. GHQ-12 scores were associated with hours of work per week in palliative care (P = 0.004). The EE (P = 0.024) and DP (P = 0.006) components of burnout were associated with years of work in palliative care. Specialist practitioners were more likely to score in the high category for GHQ-12 (odds ratio = 4.8, P = 0.036) and EE (odds ratio = 8.33, P = 0.031). GHQ (P = 0.038) and DP (P = 0.006) scores were higher in those working in tertiary institutions, with tertiary practitioners more likely to be in the high EE category (odds ratio = 7.5, P = 0.034). Levels of psychiatric morbidity and burnout in palliative medicine are not higher than in other specialties.

Diabetes Management in Patients Receiving Palliative Care

A literature review revealed no evidence-based guidelines specific to managing diabetes in the context of palliative care. The purpose of the current project was to describe the management practices of doctors and nurses caring for people with diabetes and advanced disease. Palliative care doctors, palliative care nurses, endocrinologists, and diabetes nurse educators participated in this study. A two-phase project was undertaken: 1) two focus groups, and 2) a cross-sectional survey using a self-completed questionnaire. The focus group and questionnaire data identified that doctors and nurses used a range of practices and blood glucose testing frequencies to control blood glucose based on experience and not according to a robust evidence base. Implications for practice include the importance of collaboration between diabetes and palliative care specialists, and the need to develop clinical management guidelines.

Nerve Blocks in Palliative Care

It was a pleasure to review this book on nerve blocks in palliative care, written by two renowned specialists, Fiona Hicks, who is a consultant in palliative medicine at Leeds Teaching Hospitals Trust and Karen Simpson, a consultant in pain medicine within the same trust. Nerve Blocks in Palliative Care has been composed primarily for those who are not familiar with the full potential and risks of nerve blocks in patients with neoplastic disease. As such, the book is aimed primarily at those involved in the day-to-day specialist care of cancer patients such as palliative care doctors, oncologists and specialist nurses, as opposed to pain medicine anaesthetists. This is not a ‘cook book' as to how to perform the procedures, rather it is an excellent guide on how and when to refer a patient and as such should probably be compulsory reading for those who assess patients for referral to specialist pain teams. The book starts with a very general section on the philosophy behind the use of interventional blocks. I was amused by the paragraphs on team issues and communications. Many of the problems that are alluded to in these paragraphs are all too familiar to those of us who perform pain medicine interventions. Reading this book prior to referral would help prevent some of the many misunderstandings that pain specialists come across in our practice of pain medicine. The miracle pain relieving injection with no risks does not exist! Similarly, there is no such thing as a ‘simple injection'. Team members can disagree on what is the best way of managing a particular problem and they need to be involved in discussions, in addition to the patient and the relatives. There is also a very good chapter on the assessment of pain, which is something that is often poorly performed by the nonpain specialist when you take into account the multiple pain mechanisms that may be present at any one time. There now is a wealth of information about the aetiologies and underlying mechanisms of pain in cancer patients and to try and summarise this in a chapter was obviously difficult. The chapter on pain syndromes covers this area well for the nonpain specialist. The central part of the book then proceeds to cover individual invasive procedures, ranging from trigger point injections through to the more complex neurolytic blocks and intrathecal infusions. These chapters have involved a significant amount of thought and work. Each technique is introduced by comments on specific indications and contraindications; it could be argued that these are the most important points for a non-specialist in pain medicine to take on board. Understanding the limits of any procedure and the complications that may occur are also vital. The limits and complications need to be discussed by a sympathetic person prior to referral to a pain specialist, as the patient needs to be prepared to participate in a discussion with the pain specialist in greater depth. Currently, it is not uncommon for the pain specialist to have to break the news that severe complications can occur and that there is a failure rate; the myth of the ‘miracle risk free injection' is broken, which may result in profound disappointment and occasionally increased patient distress. Finally, the book finishes with a chapter, albeit brief, on the ethics involved in pain medicine and the terminally ill. Once more, we are urged to consider not only the potential benefits but also the risks. At the end of the day, those performing the procedures are best suited to tackle the issues around interventions for pain management. However, it is important that the potential for improved pain relief and reduced suffering are not missed by those involved in the day-to-day management of cancer patients. Also, patients need to have an understanding of what may be involved prior to meeting the pain team. Recently, I have been asked to give a talk on invasive procedures to our palliative care team. I have responded by asking that they read this book on nerve blocks in palliative care – I feel that would provide them with more education than I could provide in an hour. My talk will be around this excellent book!

Lessons learned from the case of Theresa Marie Schiavo: One palliative care doctor’s perspective

Lessons learned from the case of Theresa Marie Schiavo: One palliative care doctor’s perspective

Not at Peace

Not at Peace Rachelle Bernacki Mr. G was a hospice patient. I'm a palliative care doctor. It was Friday evening. Dr. Gupta, Mr. G's physician, was out of town for the weekend, and I was covering. I was supposed to be meeting friends for dinner but had received a page that afternoon. Elsa, the unit clerk, usually greets me with a cheery "Hi, Dr. B" when I call in, but this time she said, "Oh, I'll get Sheila right away." Something wasn't right. Sheila was the new charge nurse. I had not worked with her for very long, and we were both frustrated as we went over the case—I because of the rapid staff turnover that seemed to be a continual issue at the hospice, and she at having to deal with the weekend cross-cover doc. She explained to me that Mr. G wanted his gastrostomy and tracheotomy tubes pulled. Mr. G was eighty-three years old and had been at the hospice for a few days, transferred from the hospital where he'd undergone bypass surgery a few months ago. He'd gotten the G-tube and the trach when he developed renal failure, sepsis, and pneumonia after the operation, and now he wanted them out. In fact, he said he had "never really wanted them in the first place." Apparently, the physicians caring for him had initially conveyed to the family that he would improve, but over the past few months he was "dwindling" and quite miserable. However, when Dr. Gupta signed out that morning, he told me, "I don't think Mr. G's family will want to do anything over the weekend, and we can sort it out more when I return. It's been very difficult for everyone involved." I could tell that he was including himself. Dr. Gupta had worked in hospice for twenty years and I valued his opinions. When I arrived, much later than I had hoped and not until after Sheila had already left for the day, I entered the room to find two daughters and a son, all bleary eyed. A man with a trach and PEG, but otherwise looking relatively well, was lying in the bed. His eyes were piercing blue and conveyed a sense of urgency bordering on angst. I introduced myself and explained that I had been told by Sheila and Dr. Gupta what had happened and wanted to discuss what should happen next. It was clear from the outset that the family had done all the "discussing" they wanted to do and were ready for action. I began to speak to Mr. G. Since he could not talk with his trach, I got out the pad next to his bed and gave it to him. He pushed it away. His daughter said, "He's tired of it." I told him I just needed to confirm with him that taking out the tubes was what he wanted. He nodded in agreement. The family looked at me expectantly. I knew what I was supposed to do next: write an order for morphine, and then the order to remove the trach and cap the G-tube. I couldn't tell for sure what would happen when the trach was removed. Mr. G seemed to be breathing comfortably on four liters of oxygen, but he wanted that discontinued as well. Decisions of this sort usually didn't bother me, but for some reason, something did not seem right with this one. I excused myself and paged Sheila. I asked her for more details. She told me that Mr. G's family was having a difficult time accepting his wishes, but that he himself had been clear and consistent throughout; he did not want to live a life in which he could neither eat nor speak. That afternoon she had had a long discussion with Mr. G and his children, and they had reached a consensus to pull the tubes. I re-entered the room. I explained that I had spoken to Sheila, that we would move forward and remove the tubes, that we would provide morphine for shortness of breath, and that he would...

Assessing undergraduate palliative care education: validity and reliability of two scales examining perceived efficacy and outcome expectancies in palliative care.

Medical students have traditionally received little education in palliative care. However, in 1999, as part of a revised medical curriculum, Year 4 undergraduates at Liverpool University participated in a 2-week programme of education in palliative care. To assess the effect of the education programme, 2 assessment scales were identified: the Self-efficacy in Palliative Care Scale (SEPC) (assessing efficacy in communication, patient management and multiprofessional teamworking) and the Thanatophobia Scale (assessing attitudes towards palliative care). The aim of this study was to examine the psychometric properties of these scales. The scales were examined by 5 palliative care doctors for content validity and appropriate wording. Following this, the SEPC and Thanatophobia Scales were completed by the undergraduates (n = 139) prior to and after completion of the education programme. Both scales were analysed independently on pre- and post-test scores. Cronbach's alphas of 0.84-0.85 and 0.92-0.95 were recorded, respectively, indicating high reliability. Varimax rotated principal components analysis of the SEPC Scale suggested 3 distinct factors, as theoretically expected, with high factor loadings of 0.45-0.89 at pre- and post-test. Principal components analysis of the Thanatophobia Scale suggested only 1 factor underlies the scale, as theoretically expected. All 7 items had high factor loadings of 0.60-0.81 at pre- and post-test. The results suggest that the SEPC and Thanatophobia Scales are valid and reliable assessment scales that may be of use when evaluating the impact of an education programme.

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.

Book Reviews

This is primarily a medical text with contributions from some of the leading palliative care doctors in North America and Britain. As one might expect from a medical text, it concentrates on medical aspects of care rather than the ‘softer’ elements and is very well referenced.