Palliat Med Research Articles

PC-FACS

PC-FACS

PC-FACS

PC-FACS

The need for hospital-based neonatal palliative care programs in Saudi Arabia

The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term “end-of-life care” is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue.

Response shift and outcome assessment in orthopedic surgery: is there a difference between complete and partial treatment?

Outcome measurement after surgical treatment for spinal disorders has traditionally relied on pre- and posttreatment assessment, measuring change from baseline to follow-up. These assessments assume that patients have the same perspective of their disease, and the same evaluation for their assessment of quality of life (QOL) throughout the recovery process. If the patient's internal standard of measurement were to change, the postoperative assessment must reflect this shift in addition to the actual changes in the level of functioning. Comparisons of pretest with posttest ratings may be confounded by this distortion of the scale, and consequently, an inaccurate interpretation of the effectiveness of the treatment may be obtained. We have previously shown that “response shift” exists in outcome measures used in orthopedic surgery when using self-report questionnaires [ 1 Razmjou H. Yee A. Ford M. Finkelstein J.A. Response shift in outcome assessment in patients undergoing total knee arthroplasty. J Bone Joint Surg Am. 2006; 88: 2590-2595 Crossref PubMed Scopus (62) Google Scholar , 2 Razmjou H. Schwartz C.E. Yee A. Finkelstein J.A. Traditional assessment of health outcome following total knee arthroplasty was confounded by response shift phenomenon. J Clin Epidemiol. 2009; 62: 91-96 Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar ]. The response shift phenomenon is better studied in the fields of education, nutrition, program evaluation, and in conditions, such as cancer, acquired immunodeficiency syndrome (AIDS), multiple sclerosis, stroke, and others [ 3 Echteld M.A. Deliens L. Ooms M.E. Ribbe M.W. van der Wal G. Quality of life change and response shift in patients admitted to palliative care units: a pilot study. Palliat Med. 2005; 19: 381-388 Crossref PubMed Scopus (25) Google Scholar , 4 Howard G.S. Ralph K.M. Gulanick N.A. Maxwell S.E. Nance D.W. Gerber S.K. Internal invalidity in pretest/posttest self report evaluations and a re-evaluation of retrospective pretests. Appl Psychol Meas. 1979; 3: 1-23 Crossref Scopus (304) Google Scholar , 5 Broberger E. Sprangers M. Tishelman C. Do internal standards of quality of life change in lung cancer patients?. Nurs Res. 2006; 55: 274-282 Crossref PubMed Scopus (15) Google Scholar , 6 Hagedoorn M. Sneeuw K.C. Aaronson N.K. Changes in physical functioning and quality of life in patients with cancer: response shift and relative evaluation of one's condition. J Clin Epidemiol. 2002; 55: 176-183 Abstract Full Text Full Text PDF PubMed Scopus (64) Google Scholar , 7 Jansen S.J. Stiggelbout A.M. Nooij M.A. Noordijk E.M. Kievit J. Response shift in quality of life measurement in early-stage breast cancer patients undergoing radiotherapy. Qual Life Res. 2000; 9: 603-615 Crossref PubMed Scopus (86) Google Scholar , 8 Osborne R.H. Hawkins M. Sprangers M.A. Change of perspective: a measurable and desired outcome of chronic disease self-management intervention programs that violates the premise of preintervention/postintervention assessment. Arthritis Rheum. 2006; 55: 458-465 Crossref PubMed Scopus (47) Google Scholar , 9 Tierney D.K. Facione N. Padilla G. Dodd M. Response shift: a theoretical exploration of quality of life following hematopoietic cell transplantation. Cancer Nurs. 2007; 30: 125-138 Crossref PubMed Scopus (35) Google Scholar , 10 Schwartz C.E. Sprangers M.A.G. Carey A. Reed G. Exploring response shift in longitudinal data. Psychol Health. 2004; 19: 51-69 Crossref Scopus (69) Google Scholar , 11 Ahmed S. Mayo N.E. Corbiere M. Wood-Dauphinee S. Hanley J. Cohen R. Change in quality of life in people with stroke over time: true change or response shift?. Qual Life Res. 2005; 14: 611-627 Crossref PubMed Scopus (72) Google Scholar ]. In these populations, affecting a response shift may be beneficial to a person's QOL, as it may assist with adapting to their condition.

Centrally active nonhormonal hot flash therapies

Given the problems associated with hormonal therapy, and the prominent problem of hot flashes in menopausal women, there is a need for nonhormonal agents to alleviate hot flashes. Several compounds that appear to act on the central nervous system have been investigated. Potential mechanisms for their effects on hot flashes have been described. Bellergal (no longer available on the US market, where it was known as Bellergal-S), a combination preparation sedative that consists of low-dose phenobarbital, ergotamine tartrate, and levorotatory alkaloids of belladonna, is an old agent that was popular approximately 20 years ago; however, there is limited suggestion of efficacy for this agent. Clonidine, an older antihypertensive drug, is another centrally active agent that has been studied. Randomized trials have demonstrated that it clearly works for reducing hot flashes, but the magnitude of efficacy is somewhat limited. Toxicity from this agent limits its utility in the clinic. Methyldopa is another centrally active agent that has been studied but to a more limited degree. It appears to have minimal efficacy and too much toxicity to make it clinically useful. Anecdotal observations from a number of sources suggested that newer antidepressants can alleviate hot flashes. This led to pilot trials of venlafaxine and paroxetine, with results suggesting benefit from both drugs. Subsequently, randomized, placebo-controlled, double-blind clinical trials of venlafaxine, paroxetine, and fluoxetine were conducted. All 3 of these clinical trials demonstrated statistically significant reductions in hot flashes with these newer antidepressants compared with placebo. Pilot trials of citalopram and mirtazapine, 2 other newer antidepressants, have also suggested efficacy. Toxicity evaluations have suggested that these agents are, again, well tolerated by the majority of patients. A recent trial, however, was unable to demonstrate any benefit for fluoxetine or citalopram over a placebo. Anecdotal observations also suggested that gabapentin was helpful for alleviating hot flashes. This led to pilot trials that again suggested efficacy. Subsequently, 2 large placebo-controlled, randomized, double-blind clinical trials were conducted. Both of these demonstrated statistically significant efficacy for gabapentin compared with a placebo. This drug is relatively well tolerated by most patients. Thus, centrally active nonhormonal agents clearly do decrease hot flashes in women. The most efficacious and clinically appropriate agents for use are newer antidepressants and gabapentin. Continued evaluation of the efficacy and toxicity of these agents is ongoing.

What does a good quality of life for cancer patients mean on a numerical rating scale?

Cancer and palliative-care services measure quality of life (QOL) with multidimensional scales (e.g. EORTC QLQ C30 [ 1 Aaronson N.K. Ahmedzai S. Bergman B. for The European Organization for Research and Treatment of Cancer Study Group et al. The EORTC QLQ-C30: a quality of life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993; 85: 365-376 Crossref PubMed Scopus (10466) Google Scholar ]) or uni-dimensional scales, such as verbal or numerical rating scales. Multidimensional scales provide more insights, but are often confined to research contexts because of their complexity. Uni-dimensional scales are more commonly used in routine clinical practice, and probably provide as good information, especially in advanced cancer populations [ 2 Donnelly S. Walsh D. Quality of life assessment in advanced cancer. Palliat Med. 1996; 10: 275-283 Crossref PubMed Scopus (45) Google Scholar ]. Numerical rating scales in particular are often used to assess patients' symptoms [ 3 Costello P. Wiseman J. Douglas I. Batten B. Bennett M. Assessing hospice inpatients with pain using numerical rating scales. Palliat Med. 2001; 15: 257-258 Crossref PubMed Scopus (10) Google Scholar ]. Verbal ratings of pain have been shown to be quantifiable on a visual analogue scale [ 4 Collins S.L. Moore R.A. McQuay H.J. The visual analogue pain intensity scale: what is moderate pain in millimetres?. Pain. 1997; 72: 95-97 Abstract Full Text Full Text PDF PubMed Scopus (1146) Google Scholar ]. We wanted to know how to interpret a verbal rating of QOL by cancer patients on a numerical rating scale.

Improving referral of patients to hospice through community physician outreach

Many patients are not referred to a hospice until the very end of the terminal phase of their disease process. Unfortunately, referrals that come late in the course of the illness may hinder optimal symptom management and also may preclude the hospice from meeting the psychosocial and spiritual needs of patients and their families. Indeed, late referrals have been associated with lower satisfaction with hospice care.1 Hospice of St. Mary’s County, a department of St. Mary’s Hospital in Leonardtown, Maryland is the sole provider of hospice care for a rural county with a population of approximately 93,000. In 2003 our agency implemented the National Hospice and Palliative Care Organization’s Family Evaluation of Hospice Care (FEHC) survey, an after-death survey designed for use in evaluation of quality of care. Families were mailed the survey 1 to 3 months following the death of their loved one. One question on the survey asked families whether they believed their loved one had been referred to hospice too early, at the right time, or too late. Sixteen families were surveyed at our facility. In

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2–4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.

Spain: The WHO Demonstration Project of Palliative Care Implementation in Catalonia: Results at 10 Years (1991–2001)

Xavier Gomez-Batiste, MD, Josep Porta, PhD, MD, Albert Tuca, MD, Esther Corrales, RN, Federico Madrid, MD, Jordi Trelis, MD, Dulce Fontanals, SW, Josep M. Borras, PhD, MD, Jan Stjernsward, PhD, MD, Antoni Salva, MD, and Eduard Rius, MD Palliative Care Service (X.G.-B., J.P., A.T., E.C., F.M., J.T.), Institut Catala d’Oncologia, Barcelona, Spain; Fundacio SAR (D.F.), Barcelona, Spain; Institut Catala d’Oncologia (J.M.B), Barcelona, Spain; Global Cancer Concern (J.S.), Stockholm, Sweden; Divisio Sociosanitaria (A.S.), Servei Catala de la Salut, Barcelona, Spain; and Ministry of Health (E.R.), Government of Catalonia, Barcelona, Spain

The Ethical Imperative to Relieve Pain at Life's End

Evidence continues to amass, revealing that many patients, and especially the terminally ill, experience serious, debilitating pain, in a variety of medical settings. 1–4 Only recently has pain at end of life been viewed as a public health problem of significant enough proportions to instigate widespread efforts at improvement. 5,6 Traditionally, pain (other than that associated with painful medical/surgical procedures) has been seen as a harbinger of illness and as a symptom whose patterns are useful to aid in diagnosis. However, it became clear a few decades ago during the expansive years of critical care, surgery, and anesthesiology that pain was more than a symptom signaling tissue injury, inflammation, or ischemia. Uncontrolled pain with its resultant physiological stress responses contributed to pathophysiological events, leading to preventable morbidity and mortality from cardiovascular and pulmonary catastrophes. Aggressive treatment of pain in perioperative and trauma settings is becoming the standard of care, as a response to the ethical obligation to prevent and cure disease and its manifestations when possible. What has been slower to develop is the same sense of urgency around researching and treating persistent debilitating pain associated with chronic progressive disease states. This, in spite of overwhelming evidence pointing to the high prevalence rates of pain that greatly impact quality of life and functional capacities in many chronically ill patients. At one end of the spectrum are patients with imminently life-limiting diseases, such as those with advanced malignancies, that account for more than 20% of deaths in the United States. 7 On the other end is the common occurrence of chronic pain associated with osteoarthritis, other joint and spinal degenerative disorders, postherpetic neuralgia, diabetic neuropathy, post-stroke central pain, and many more common conditions experienced by our aging population. 8