"Although palliative care is not a customary area of practice for CRNAs, the knowledge and skills necessary to provide competent and compassionate palliative and end-of-life care are present in many nurse anesthetists." --Margaret Faut Caliahan, CRNA, PhD, FAAN, Susan Breakweil, RN, DNP, APHN-BC, Rosemarie Suhayda, RN, PhD
The above statement is from the study article "Knowledge of Palliative and End-of-Life Care by Student Registered Nurse Anesthetists." [AANA J. 2011 Aug;79(4 Suppl):S15-20.]
"Every day, nurses in the intensive care unit (ICU) care for critically ill, elderly patients who have not been offered the option of hospice care." --Deborah Borowske, DNP, MSN, RN, GCNS-BC
The above is a statement from the article "Straddling the Fence: ICU Nurses Advocating for Hospice Care." [Crit Care Nurs Clin N Am. 2012;24:105–116.]
"The studies reviewed here show the lack of enough knowledge in oncology amongst fresh medical graduates and practicing physicians across the developing world." --Mohamed Amgad, Emad Shash, Rabab Gaafar
The above is from the study article "Cancer education for medical students in developing countries: Where do we stand and how to improve?." [Crit Rev Oncol Hematol. 2012 Mar 2.]
"Early palliative care access can improve symptom control and patient quality of life and reduce the cost of care. Unfortunately, a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units." --Eduardo Bruera, MD, Sriram Yennurajalingam, MD
The above is a statement from the article titled "Palliative Care in Advanced Cancer Patients: How and when?" [Oncologist. 2012 Jan 17.] This article provides a good overview of the evidence that shows how palliative/supportive care can be beneficial in managing what was presumed to be intractable symptom burdens, while also reducing the cost of care and improving survival.
"Despite stepped-up efforts to educate nurses on EOL and palliative care, oncology nurses are unfortunately receiving less education about palliative care than they did a decade ago." --Kenneth R. White, PhD, MSN, RN, and Patrick J. Coyne, MSN, APRN, ACHPN, ACNS-BC, FAAN, FPCN
The above is a statement from a landmark survey study article titled ""Nurses’ Perceptions of Educational Gaps in Delivering End-of-Life Care."[Onc Nurs Forum. 2011;38(6):711-17.] This is a 10-year follow-up study that involved "714 members of the Oncology Nursing Society from Georgia, Virginia, Washington, and Wisconsin." [One of the purposes of the survey was to determine if oncology (cancer) nurse specialists are receiving more continuing education about palliative care topics.] The findings: "Almost all of the respondents indicated that EOL [end-of-life] care was a part of their practice and that continuing education was important, but more than half of the respondents had fewer than two hours of continuing education regarding EOL care in the past two years."And..."Given that a decade has passed since the previous study (White et al., 2001), which included a question about the amount of EOL continuing education in the previous two years (1997–1999), it is surprising that the percentage of respondents who had received any EOL continuing education education in this study (2007–2009) had decreased from 74% in 1999 to 63% in 2009." For this group sample, "The mean time since becoming licensed as a nurse was 21.3 years, and the mean age was 48.5 years (range = 24–79 years)."
"...when nurses are exposed to care of the dying without receiving a systematic death education, they suffer a higher incidence of death anxiety and develop negative attitudes toward care of the dying." --Eduardo Mario Mutto, M.D. Alicia Erra´zquin, Ph.D., Maria Margarita Rabhansl, R.N. and Marcelo Jose Villar, M.D., Ph.D
The above is a statement from the survey study article titled "Nursing Education: The Experience, Attitudes, and Impact of Caring for Dying Patients by Undergraduate Argentinian Nursing Students." [J Palliat Med. 2010 Dec;13(12):1445-50.] In the Introduction of the article, the authors' pointed out that "Many nurses and nursing students have difficulties in dealing with death and report feeling anxious and unprepared to be with patients who are dying. In fact, they consider their basic nursing education to be inadequate for end-of-life care. Also, they need to struggle with negative personal issues concerning death and dying, and therefore are uncomfortable providing care at the end-of-life. Furthermore, nurses’ strong emotional reactions to patient suffering may result in their disengagement from or avoidance of the patient and his/her family or in dissatisfaction with work, and may also fail to attend some details of care." The authors' also cited 11 recent studies in other countries revealing problems in nursing education and stated that "There is extensive research documenting the serious deficiencies in undergraduate nursing education and in nursing knowledge and attitudes related to end-of-life care."
"The Institute of Medicine, all major societies representing critical care professionals, large-scale hospital networks, and government and industry healthcare payers agree that palliative care is a priority area for ICU quality improvement." --Joan D. Penrod, PhD; Peter J. Pronovost, MD, PhD; Elayne E. Livote, MPH, MS, MA; Kathleen A. Puntillo, RN, CNS, DNSc, FAAN; Amy S. Walker, MA; Sylvan Wallenstein, PhD; Alice F. Mercado, RN, MBA; Sandra M. Swoboda, RN, MS; Debra Ilaoa, RN; David A. Thompson, RN, MS, DNSc; Judith E. Nelson, MD, JD
The above is a statement from the prospective study article titled "Meeting standards of high-quality intensive care unit palliative care: Clinical performance and predictors." [Crit Care Med. 2012;40(4):1-8.] Investigators in this study applied a well-developed palliative care bundle " ...of nine process measures of the quality of ICU palliative care: identification of a medical decision-maker; determination of advance directive status; investigation of cardiopulmonary resuscitation preference; distribution of a family information leaflet; interdisciplinary family meeting; offer of social work support; offer of spiritual support; regular pain assessment; and appropriate pain management."
"Many people in the United States die without dignity due to the gap between the need for palliative care services and the supply of trained palliative care professionals." --Thomas Bui, MD, MPH
The above is a statement from the article "Effectively Training the Hospice and Palliative Medicine Physician Workforce for Improved End-of-Life Health Care in the United States." [Am J Hosp Palliat Care. 2011 Dec 15.]
"It is estimated that 95% of deaths would benefit from palliative care, yet as many as 70% of Canadians lack access because hospice and palliative care programs are unevenly distributed across Canada." --UDO SCHÜKLENK, JOHANNES J. M. VAN DELDEN, JOCELYN DOWNIE, SHEILA A. M. MCLEAN, ROSS UPSHUR AND DANIEL WEINSTOCK
The above is a statement from a Canadian expert panel report titled "End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making." [Bioethics. 2011 Nov;25 Suppl 1:1-73.] One thing the report noted was that "Research suggests that most Canadians desire to die at home. Studies conducted on locations of death over the past decade have shown some trends in that direction; however, the vast proportion of deaths – particularly those associated with chronic diseases – occur in institutional settings. Statistics Canada data indicate that 68.6% of Canadians die in a hospital and 31.4% die elsewhere." The link to the report is found at http://www.rsc.ca/documents/RSCEndofLifeReport2011_EN_Formatted_FINAL.pdf .
"Caregivers should be trained in the basic principles of pediatric palliative care and should be prepared with the skills, confidence and expertise to provide consistent and high-quality end-of-life care." --Helena Moura, Vera Costa, Manuela Rodrigues, Filipe Almeida, Teresa Maia, Hercilia Guimaraes
The above is a statement from a retrospective study showing what progress has been made in improving end-of-life care practice during a decade in a major neonatal hospital in Portugal. The title of the article is "End of life in the neonatal intensive care unit." [Clinics (Sao Paulo). 2011;66(9):1569-72.] One of their first remarks was that "More infants die in the first 28 days of life than during any other period of childhood, and neonatal palliative care is rarely offered." In their discussion portion of the article they stated that "These results show that our NICU urgently needs to develop neonatal palliative care, adopt guidelines and maintain regular staff education to improve the end-of-life care of newborns."
[The above study is a good reflection of what is still a standard of neonatal care in "developed" countries that adopt Western medical practices.]
"A majority of the barriers to hospice referral may be overcome with education and normalization of hospice as an appropriate and effective medical intervention." --Katherine Freund, BS, Michelle T. Weckmann, MS, MD, David J. Casarett, MD, Kristi Swanson, MS, Mary Kay Brooks, RN, MSN, CPHQ, Ann Broderick, MS, MD
The above is a statement from the retrospective study article "Hospice eligibility in patients who died in a tertiary center." [J Hosp Med. 2011 Nov 15.] The study showed that 60% of the patients who died were eligible for hospice, yet only 14% were informed that they were eligible. "While bereaved families uniformly express satisfaction with, and appreciation of, hospice services, hospice is often not mentioned until the patient is imminently dying, and this may be the first time the patient realizes hospice is an option."
If, by chance, palliative care services are offered when a significant life-threatening disease is first diagnosed, then palliative therapy can be offered as an alternative to aggressive surgical or medical treatments. --Heath K. McCullough MD, R. Morgan Bain MD, Hollins P. Clark MD, Jay A. Requarth MD
The above is from the retrospective study article "The Radiologist as a Palliative Care Subspecialist: Providing Symptom Relief When Cure Is Not Possible." [AJR Am J Roentgenol. 2011 Feb;196(2):462-7.] http://www.ncbi.nlm.nih.gov/pubmed/21257901 This was a study by a group of radiologists who wanted to "determine the percentage of patients referred to an interventional radiology (IR) practice who need palliative care." Their results "Two-hundred eighty-two patients were referred to the IR service and underwent a total of 332 interventional procedures. Most of the patients (229 [81.2%]) had underlying diagnoses that would warrant consultation with a hospice and palliative medicine subspecialist." The authors also wanted to provide details about how radiologists can become board certified in the sub-specialty of palliative radiology.
"Varying levels of experience in providing EOL care and inconsistent training across professions and educational institutions contribute to deficits in knowledge and problematic attitudes toward EOL care." --Anne M. Walling, MD, PhD, Iris Cohen Fineberg, PhD, MSW, Katherine Brown-Saltzman, MA, RN, Neil S. Wenger, MD, MPH
The above statement is from a prospective survey study article "An Interdisciplinary Educational Program to Improve Knowledge and Attitudes About an End-of-Life Symptom Management Protocol." In this study the investigators "...tested an education program designed to improve perspectives regarding end-of-life symptom management in the context of implementing an end-of-life symptom management order protocol. The case-based, interactive multidisciplinary educational program included practice with decision making, family discussion, and order writing. ...The educational intervention was timed to coincide with the introduction of the institution’s end-of-life symptom management order (ESMO) Protocol and was evaluated using pre and post survey methodology." One reason that the ESMO was developed is because "Hospitals across the country struggle to enhance palliation among dying patients." Furthermore, "This study shows that knowledge and attitudes can be improved with a practical, interactive, interdisciplinary program in the context of an ESMO protocol. After learning about the ESMO protocol, clinicians not only were more comfortable caring for dying patients, but they also were more likely to identify that there are missed opportunities for use of EOL opiates."
"There are now more than 2,500 doctors schooled and trained in hospice and end-of-life care, which is enormous progress. But the number still amounts to less than 1 percent of the nation’s doctors." –Eleanor Cleft
The above is from the article "Hospice and the end game," which is a personal reflection by an investigative Newsweek reporter whose husband died of cancer. [ Health Aff (Millwood). Aug 2011;80(8):1606-09.]
"Palliative care and aged care should not primarily be the province of the hospital and the acute health care system, and our continued acceptance of this and of the concentration of health care spending in the last months of life is no longer tenable. It represents both bad care and a waste of money." --Annette Katelaris, MB BS, MPH, FRACGP (Editor Medical Journal of Australia, Sydney, NSW)
Above is a statement made in the editorial "Time to rethink end-of-life care" within a recent issue of the Medical Journal of Australia." [Med J Aust. 2011 Jun 6;194(11):563. PubMed] The editorial was in regards to two studies being published in the journal, including a summary that "Of patients in their study who were suitable for palliative care, 70% had at least one visit to the emergency department and 96% were admitted to hospital during their last year of life, with an average of eight admissions and a mean length of stay of 6 days. Most of the admissions and time spent in hospital occurred within the last 3 months of life, and 62% of patients died in hospital. These are all markers of a poor standard of palliative care (J Clin Oncol 2003; 21: 1133-1138), which we accept too readily."
"Our study confirms that there is extensive use of inpatient services and EDs in the last year of life by people whose deaths are clinically expected." --Lorna K Rosenwax, Beverley A McNamara, Kevin Murray, Rebecca J McCabe, Samar M Aoun and David C Currow
The above is a concluding statement made in the retrospective study by a group of Australian medical investigators who examined the use of emergency room service of patients with cancer and other life-limiting diagnoses during their last year of life. [Med J Aust. 2011 Jun 6;194(11):570-3. Their final remarks were "Given the potential for inappropriate use of hospitals for people whose deaths are clinically expected, more careful consideration must be given to service design and delivery for this group of vulnerable people. The heavy reliance on the acute-care system does not necessarily reflect the most appropriate use of resources for patients at the end of life. Planning should cover a continuum of care, and should involve the patients and their families together with their general practitioners."
The above study is reminiscent of the landmark 1995 SUPPORT study [JAMA. 1995 Nov 22-29;274(20):1591-8.PubMed] conducted in the USA that revealed similar problems in USA end-of-life (EoL) care, in that the underlying problem is that relatively few health care workers have any formal education or competency in palliative and hospice medicine.
"Multiple studies have shown that specialist palliative care is beneficial for patients in reducing pain and other symptom burden, addressing other factors that may contribute to the suffering of the patient and family, increasing satisfaction with care, and reducing cost." --Serife Eti, MD
The above is an editorial statement made in the Preface to a special issue of Primary Care that covers some important topics in palliative care. [Prim Care. 2011 Jun;38(2):327-61. PubMed] As Dr. Eti noted, there is a need for palliative care knowledge and training because of "An aging population, the growing prevalence of chronic illnesses with functional disability, and the potential for palliative care to reduce health care costs will increase the importance of palliative care in health care system reform."
"Current LCME (Liaison Committee on Medical Education) and ACGME (Accreditation Council for Graduate Medical Education) guidelines for US medical school and residency education, respectively, are sparse relative to teaching the concepts of palliative/hospice/end-of-life care." --Joel J. Heidelbaugh, MD
The above is an editorial statement made in the Forward to the special issue of Primary Care that covers some important topics in palliative care. [Prim Care. 2011 Jun;38(2):327-61. PubMed] The next statement reads "However, this rapidly expanding field of medicine is fast becoming deemed as necessary for all clinicians to embrace, understand, and implement into practice on the level of a multidisciplinary and team-based approach."
"Survey results show that a majority (82 %) of hospitals continue to lack palliative care programs, and even knowledge of palliative care was limited." --Anne P. Glass, Ph.D, and Molly Burgess, B.M.T.
The above is a statement from a new report titled "A statewide status report on hospital-based palliative care programs." [J Palliat Med. 2011 May 16. PubMed] Two of the conclusions drawn from this study is that "Those that do have palliative care services primarily offer consultation only, and there is wide variation in policies and activities." And..."There continues to be an urgent need for more health care practitioners with specialized palliative and end-of-life care training."
The above report is a follow-up study to determine the accuracy of how many palliative care programs exist in the state of Georgia, in comparison to the number projected in a 2008 nationwide survey conducted by a group of investigators who reported that 55% of hospitals in the USA with over 100 beds have a palliative care service. [The 2008 figure has been widely reported in the medical literature. In any case, even if the majority of hospitals with over 100 beds have a PC service, the fact is that referrals to palliative care are few and far between.]
"...formal training in end-of-life skills for critical care physicians is rare, and most postgraduate training programs do not have educational curricula for this training process." --Irene M. Spinello, MD, FCCP, FCCM
The above is a statement from the article "End-of-Life Care in ICU: A Practical Guide." [J Intensive Care Med. 2011 Mar 24. PubMed] The next remark in the article is "As a result, end-of-life management in an intensive care unit (ICU) is sometimes considered an additional or an optional but not an integral part of critical care management." This is a shame because, as the author also noted "Death is unfortunately a common occurrence in the intensive care unit (ICU); a recent study suggests that approximately 20% of deaths in the United States occur after a stay in the ICU." Dr. Spinello also pointed out that "Knowing that 35% of all health care expenditure is due to hospital care and assuming that at least 10% of hospital care is provided in ICU, the conservative estimate is that ICU cost is close to and may exceed $220 billion a year."
"Research findings are beginning to suggest that hospice and palliative care may not just do a good job of ameliorating distressing symptoms, it also saves dollars, extends life, and improves satisfaction with care." --Elizabeth Johnston Taylor, PhD, RN
The above is from the editorial "Hospice and palliative care: a growing and needed international phenomenon." [Home Healthc Nurse. 2011 Mar;29(3):133-4. PubMed]
"Medicine still treats death as a defeat instead of treating it as a part of life." --Beata Dobrowolska, Ph.D., Tomasz Cuber, Ph.D., Barbara S ´ lusarska, Ph.D., Danuta Zarzycka, Ph.D., and Irena Wron´ska, Ph.D.
The above statement is from a study conducted in Poland "Analysis of the Nurses’ and Physicians’ Opinion Regarding Their End-of-Life Education." [J Palliat Med. 2011 Feb;14(2):126-7. PubMed] In the opening of the article it reads "The review of literature proves that preparation of physicians and nurses for end-of-life care is still not adequate and needs to be improved."
"The need for better understanding of end-of-life decision-making has never been greater." --David W. Frost, MD; Deborah J. Cook, MD, MSc; Daren K. Heyland, MD, MSc; Robert A. Fowler, MDCM, MS
The above is a statement from the article "Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: A systematic review." [Crit Care Med. 2011 Feb 17. PubMed] This study revealed how there are many factors involved in making end-of-life decisions. Many bad decisions in end-of-life care could be avoided if clinicians had a good understanding of how these factors must be recognized and taken into consideration. As the authors' concluded "We have identified that there are many common patient and clinician factors that influence decisions. Individual patients, substitute decision-makers, and clinicians may approach these discussions with different expectations and preferences, often influenced by geography, religion, race, and culture. An appreciation of all of these factors associated with more and less intense end-of-life care may raise awareness, aid communication, and guide clinicians in end-of-life discussions." They also noted that "...physicians with more clinical experience and those routinely working within the ICU are less likely to recommend technologically intense care for critically ill patients at the end-of-life."
[In our current medical system, it takes many years of experience to learn how to appropriately care for dying patients. The initial years of the career are enjoyed being a hotdog and rescuing and attempting to restore everything that is abnormal--even if it is the unrecognized manifestitations of advancing incurable conditions and the progression of natural death. If education and training about hospice and palliative life medicine was incorporated from early on, clinicians could provide more appropriate care of those with an incurable or terminal condition--from the get-go of their career. But this education has been all but absent in medicine, whereas curative and heroic care knowledge is emphasized, mandated, and routinely utilized instead--regardless of the patients incurable status.]
"Nurses have a key role to play in the development of palliative and end-of-life care practice and can lead the way in working with patients and their families to aid gradual transitions to palliative care and help them to make to appropriate plans for end-of-life care which fit in with their needs and preferences." --Jane Seymore PhD
The above statement is from the editorial "Changing times: preparing to meet palliative needs in the 21st Century." [Br J Community Nurs. 2011 Jan;16(1):18. PubMed] The editorial opens with these remarks: "Globally, 56 million people die each year and for many, in resource-rich as well as resource-poor countries, the process of dying is associated with significant but preventable suffering. Since the introduction of the modern hospice movement in the 1960s, marked by the opening of St Christopher’sHospice in Sydenham, London by the late Dame Cicely Saunders, the principles and practice of palliative care have been disseminated round the world, to the extent that palliative care has been coined by some commentators as a human right." [The world does indeed have a lot of people who die each year, and considerably much more who are dying from a terminal illness or living with a life-limiting disease. This is why it is imperative for palliative life care to become a basic human right for all people. The profound lack of palliative life care is one of the biggest failures of medicine and all humanity.]
"Although there is growing recognition of the importance of interdisciplinary communication and the potential role for interdisciplinary team members in supporting physicians to enhance advance care planning and communication about end- of-life care there are limited data on exactly how best to accomplish this goal." --Daisy J.A. Janssen, PhD et al
The above statement is from the article "Advance care planning for patients with COPD: Past, present and future." [Patient Educ Couns. 2011 Feb 11. PubMed]
[Probably the way to accomplish this goal is to have a simple form for nurses to score their patient's current advance care planning status. For patients' who do not have an advance directive, the nurses could start providing education about ACP. Otherwise, a person who specializes in ACP education could consult with the patient and family to educate them about ACP and help them to fill out an advance directive.]
"Although palliative care is desired by patients and their families, it is often poorly administered or more often, not at all administered. Low-quality palliative care can result in underuse of effective therapies, overuse of aggressive therapies, and misuse of other therapies." --Rebecca Aslakson, MD, MSc, Peter J. Pronovost, MD, PhD
The above statement is from the article "Health Care Quality in End-of-Life Care: Promoting Palliative Care in the Intensive Care Unit." [Anesthesiol Clin. 2011 Mar;29(1):111-22. PubMed] This is a very nice review article. The final remarks in the Summary state that "Although the structure of palliative care in an ICU varies by the local context and resources, all hospitals, ICUs, and health care providers need to ensure that patients receive evidence-based palliative care that relieves suffering, improves communication, adheres to patient values and wishes, and occurs alongside—rather than separate from—curative care."
"In Australia, despite having had principles of goal setting and broad palliative care education as part of the medical curriculum for over 20 years, specialist palliative care services, only 42% of patients who die of advanced cancer and other terminal illnesses in the country’s busiest acute hospital are referred to a specialist palliative care service." --Ian E Haines, MBBS, FRACP, FAChPM
The above statement is from the editorial "Managing patients with advanced cancer: the benefits of early referral for palliative care." [Med J Aust. 2011 Feb 7;194(3):107-8. PubMed]
[The same situation with low referral to palliative care is prevalent throughout the developed world because few clinicians are educated in palliative life care and are not aware of the benefits of early referral. Moreover, no special ward or personnel is actually needed unless symptom burdens are unmanageable. All staff should be competent in palliative life care delivery so that it can be available in any health care setting and patients who need this service will get it no matter the staff member they encounter.]
"The results of this study suggest the need to provide improved end-of-life of education to NICU nurses." --Valerie Wright, MSN, RN; Marilyn A. Prasun, PhD, CCNS, FAHA; Cheryl Hilgenberg, EdD, RN, CTN-A, CNE
The above statement is from the study article "Why Is End-of-Life Care Delivery Sporadic? A Quantitative Look at the Barriers to and Facilitators of Providing End-of-Life Care in the Neonatal Intensive Care Unit." [Adv Neonatal Care. 2011;11(1):29-36. PubMed] This is a noteworthy study that provides further evidence of the need for more comprehensive and standardized education of NICU staff in end-of-life care. In this case, the investigators remarked that "In this study, 100% of the nurses completing the survey strongly/somewhat agreed that palliative care education was necessary in neonatal nursing education."
"In summary, our study suggests that, as perceived by the ICU clinicians, there are domains in which ICU palliative care needs targeted improvement, including spiritual support for families, emotional support for clinicians, and clinician education about palliative care in the ICU." --Lawrence A. Ho, MD; Ruth A. Engelberg, PhD; J. Randall Curtis, MD, MPH; Judith Nelson, MD, JD; John Luce, MD; Daniel E. Ray, MD; Mitchell M. Levy, MD
The above statement is from the study article "Comparing clinician ratings of the quality of palliative care in the intensive care unit." [Crit Care Med. 2010;39(5):1-9. PubMed]The objective of the study was "...to describe and compare the quality of palliative care delivered in an intensive care unit as rated by physicians and nurses working in that intensive care unit." The investigators used aspects of palliative care that contribute to high quality care, such as the Robert Wood Johnson Foundation’s Critical Care End-of-Life Peer Work Group's seven specific palliative care domains that were established in work by Mularski et al in 2006. "The domains include: 1) patient- and family-centered decisionmaking; 2) communication within the team and with patients and families; 3) continuity of care; 4) emotional and practical support for families; 5) symptom management and comfort care; 6) spiritual support of patients and families; and 7) emotional and organizational support for ICU clinicians."
"The under-utilization of PC services throughout the health care system has drastic implications for patients, their families and caregivers, and the system as a whole." --Travis E. DeVader, MD, Robert Albrecht, MD, and Mark Reiter, MD, MBA
The above statement is from the article "Initiating palliative care in the emergency department." [J Emerg Med. 2011 Jan:1-8. PubMed] A summary at the end of the article reads "By identifying patients that may benefit from specialized palliative care in the ED, patients and their families will be provided better care, avoid unnecessary hospitalizations, and will have the psychosocial support systems in place to cope with death."
"It is an injustice to those for whom we care that a hospice cannot be reimbursed for the services of a PA [physician assistant]. One of the highest values of the hospice philosophy is that of a team working together for a family in crisis. How ironic that our profession, so devoted to the team approach to care, is denied the ability to be part of the hospice team." --Kathy Kemie, PA-C, MS
The above statement is from the editorial "Hospice and palliative care: The time to get involved is now." [JAAPA. 2011 Jan;24(1):13. PubMed] This was written by a physician assistant who stated that "In 2008, I won the AAPA's PAragon Award for outstanding PA of the year, and I donated my award money for the construction of the Pine Pointe Hospice House, part of the Hospice of Central Georgia (http://hospiceofcentralgeorgia.org)." [This editorial is an example of why palliative care and hospice is NOT a multi-disciplinary service. That is, more than 99% of all health care professionals do not have any formal education or training in palliative medicine, although most clinicians routinely work with patients who desperately need competent and comprehensive palliative life care.]
"Palliative care has developed in an ad hoc style, frequently through grass roots efforts that are predominantly focused on day-to-day health care tasks, rather than through thoughtful, sequential progressions in response to intellectual exploration, new discoveries, and scientific implementation." --Guido Biasco, MD et al
The above statement is from the perspective article by Maroni et al titled "Investment of palliative medicine in bridging the gap with academia: A call to action." [Eur J Cancer. 2011 Jan. PubMed]
"According to the National Institutes of Health (NIH), pain is one of our most important national public health problems, a silent epidemic. In 1998, NIH reported that the annual amount spent on health care, compensation, and litigation related to pain had reached one hundred billion dollars ($100,000,000,000). Considering that health care costs have doubled since then, it is not unreasonable to assume that the costs related to pain care have doubled as well. Millions of patients suffer needlessly with acute pain, with cancer pain, and with chronic pain." --Charles Brock, MD; Ronald Crossno, MD; Jose David, MD; Michel Dubois, MD; Albert Ray, MD; and Philipp M. Lippe, MD, FACS
The above statement is from "The first national pain medicine summit-final summary report." [Pain Med. 2010 Oct;11(10):1447-68. PubMed] [Further evidence that pain management is indeed a serious and costly problem. And this only reflects the USA, but pain is a global problem that is even worse in undeveloped countries. And the underlying problem is insufficient education and competency amongst physicians and nurses.]
"Health professionals function largely within a culture that focuses on cure, and many avoid the patient who is dying. It is therefore vital that all health care practitioners who have contact with people who are dying, including medical, allied health science and nursing are aware and apply the best principles of palliative care." --Sakshi Sadhu, MD Naveen Sulakshan Salins, MD, Asha Kamath, MD
The above statement is from the study article "Palliative care awareness among Indian undergraduate health care students: A needs-assessment study to determine incorporation of palliative care education in undergraduate medical, nursing and allied health education." [ Indian J Palliat Care. 2010 Sep;16(3):154-9. PubMed] The authors' of this study further revealed that "Medical students and other health care students across the globe are still uncomfortable facing death and dying. The prevailing medical culture continues to view death as a medical failure. Palliative care, despite its growing scientific base, is often perceived as not important. Many trainees do not view palliative care skills as core clinical competencies. These attitudes coalesce into practice patterns that tend to devalue the provision of palliative care even though there is an increasing need for humane medical care at the end of life."
"...delivery of high-quality hospice and palliative care cannot take place without sufficient number of health professionals with appropriate training and skills." --Dale Lupu, PhD
The above statement is from the study article "Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage." [J Pain Symp Man. Dec 2010;40(6):899-911. PubMed] This is an outstanding study that was performed on behalf of the American Academy of Hospice and Palliative Medicine Workforce Task Force. The objective of the study was to "Develop estimates of the current supply and current need for HPM [hospice palliative medicine] physicians. Determine whether a shortage exists and estimate size of shortage in full-time equivalents (FTEs) and individual physicians needed." And indeed, the results did reveal that there is a profound shortage of such physicians in the USA. Although there are 4400 HPM physicians currently in the USA, most practice part time. The estimated gap in the number of more physicians actually needed is over 14,000." [But even if the number of qualified physicians could ever be (miraculously) met, it will take many years to accomplish the task and will be essentially useless without having all of the support staff also competent in palliative life care.]
“Despite the widespread assumption among policymakers and professionals that people prefer to die at home, 66% of people in the United Kingdom die in hospitals. With a third of these individuals dying in the first few hours of admission to the hospital and many being admitted through the ED, knowledge of end-of-life issues in the emergency care setting is fundamental.” --Cara Bailey, PhD, RGN, Roger Murphy, PhD, BSc, Davina Porock, PhD, RGN
The above statement is from the study article “Trajectories of End-of-Life Care in the Emergency Department.” [Ann Emerg Med. 2010 (Dec 3). PubMed] The authors' further noted that "Death, dying, and bereavement are daily occurrences in the ED, but despite more than 22,000 people dying in EDs annually, it is a sadly neglected area of research, professional development, and practice."
[And not only is this knowledge urgently needed for emergency department personnel, it is needed for all personnel—in every health care setting, and in every country.]
"We must go beyond cancer and help people at the end-of-life no matter what the illness." --Scott A Murray, Bruce Mason, Anne Donaldson
The above statement is from the Commentary article "What are the key challenges facing palliative care internationally in the next 10 years?" [Intl J Palliative Nur. 2010;16(7):316-19.] Below is a list of these challenging goals, which could most expediently be accomplished when all health care workers become officially certified in palliative life care. [And not in ten years--but only two years!]
- The first challenge is to reach all people in need with any life-threatening illness, taking palliative care beyond cancer from which only 25% of people now die.
- The second challenge is to help people earlier rather than later, not just in the very terminal stage but from diagnosis of a life-threatening illness.
- The third challenge is to care for all aspects of the person, all dimensions—physical, psychological, social and spiritual, and to regain a spiritual lens that was present when palliative care was born 50 years ago.
- The fourth challenge is to have reliably good end-of-life care available in all settings: in the community, nursing homes and hospitals as well as in hospices.
- The fifth challenge is making end-of-life care available for people in all nations, especially in poorer countries.
"The structure, function and goals of the medical and nursing models are considerably different to the ‘traditional’ provision of palliative care. Staff in the ICU are rarely formally trained in end-of-life-care, yet for 30% of Scottish ICU admissions, this is exactly what they will be providing." --Alistair McKeown, Chris Cairns, Mike Cornbleet, Andrew Longmate
The above is from the recent Scottish study article "Palliative care in the intensive care unit: an interview-based study of the team perspective." [Intl J Palliative Nur. 2010;16(7):334-338.] The investigators explined that "This study aimed to explore in depth the ICU team’s views and experiences of the difficulties of providing palliative care in Stirling Royal Infirmary ICU." [The study provides further evidence that developed countries throughout the world are confronted with the same dilemmas in EOL care in the intensive care units (ICUs). That is, the staff have no formal education or training in palliative care medicine, yet their beds are significantly filled by patients at their end of life. Once all staff become competent in palliative lifemedicine, there will be less hopeless patients filling these beds because staff in regualr wards will be able to provide the appropriate care that is needed.]
"Palliative care in long-term care facilities and in geriatric wards is currently insufficiently developed in Europe. In addition, services available vary considerably and do not always meet the specific palliative care needs of the elderly, in particular for non-cancer-related terminal diseases." --Ruth Piers, MD et al
The above statement is from an article titled "Palliative care for the geriatric patient in Europe : Survey describing the services, policies, legislation, and associations." [Z Gerontol Geriatr. 2010, Nov 20. PubMed] This was a survey "to map the existing palliative care structures for geriatric patients, the available policies, legislation, and associations in geriatric palliative medicine in different countries of Europe."
"Although the number of certified physicians and nurses is increasing, many physicians and nurses who have not been certified may not have received sufficient education in palliative and EOL care routinely provide this care." --Dena Schulman-Green, PhD, Elizabeth Ercolano, DNSc, RN, Sheryl LaCoursiere, PhD, APRN, FNP-BC, Tony Ma, PhD, Mark Lazenby, PhD, APRN, and Ruth McCorkle, PhD, FAAN
The above statement is from the article "Developing and Testing a Web-Based Survey to Assess Educational Needs of Palliative and End-of-Life Health Care Professionals in Connecticut." [Am J Hospice Palliat Med 2010, Nov 7.] In the Introduction of this article there is a statement that "A major deficiency is that there are too few professionals certified to provide palliative and EOL care in Connecticut.There are only 27 physicians and 163 nurses certified in palliative and hospice care to provide services to the 28,000 residents who die each year, in addition to residents not at the end of life who seek palliative care." [This same type of situation is also prevalent throughout the rest of the USA, which could be readily remedied by getting all health care workers certified in palliative life care.] The authors' also noted why palliative care knowledge is needed by all health care workers with the remark that "Some providers of palliative and EOL care will be experts in one specialized domain, for example, pain management. However, every health care professional on the care team should have some knowledge about all aspects of palliative and EOL care. For example, a chaplain needs to have some knowledge of symptom management, and a practitioner who specializes in pain management needs to know how to assess spiritual care."
"As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival." --Jennifer S. Temel, MD et al.
The above statement is from the article "Early palliative care for patients with metastatic non-small-cell lung cancer." N Engl J Med 2010 Aug 19;363(8):733-42. In the same issue of this journal, Amy S. Kelley, M.D., M.S.H.S., and Diane E. Meier, M.D. wrote an Editorial titled "Palliative Care — A Shifting Paradigm" [N Engl J Med. 2010 Aug 19;363(8):781-2. PubMed] and stated that "Despite the increasing availability of palliative care services in U.S. hospitals and the body of evidence showing the great distress to patients caused by symptoms of the illness, the burdens on family caregivers, and the overuse of costly, ineffective therapies during advanced chronic illness, the use of palliative care services by physicians for their patients remains low. Physicians tend to perceive palliative care as the alternative to life-prolonging or curative care —what we do when there is nothing more that we can do — rather than as a simultaneously delivered adjunct to disease-focused treatment." Paradoxically, they also made a statement that "These programs [comprehensive palliative care] are now available at more than 80% of large U.S. hospitals (those with more than 300 beds), where most Americans receive their care during complex and advanced illness." [But just because such programs are said to exist, their active involvement in treatment may be highly deficient if the service is not routinely utilized. More importantly, the vast majority of staff in these facilities are not officially or formally educated and proficient in palliative life care, which is why referrals into palliative care are so low. Palliative life certification for all health care workers would resolve this widespread problem.]
"Despite more than 30 years of an organized, regulated, and government-financed system for providing hospice care to adults in the United States, the care of children with terminal or life-threatening illnesses remains woefully inadequate. Lack of access to services, ignorance on the part of health care professionals, and a Byzantine health care financing system all contribute to needless suffering for children who, though beyond the reach of curative medicine, still deserve to live out their days in comfort, in the company of family, and with the support of a health care team." --Susan K. Rogers, MS, BSN, CHPN, et al
The above statement is from the article "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer." N Engl J Med 2010 Aug 19;363(8):733-42. Within this article by Rogers et al, the following statements were made "The model we developed assumes that the resources necessary to provide state-of-the art palliative care exist in this country. In other words, the deficiencies that exist are not the result of inadequate technology, lack of knowledge, or unanswered questions about the need for pediatric palliative care services. Indeed, any region of the country with basic health care delivery systems for children is capable of providing palliative care." [It is true that the resources of technology and staff do exist, but the lack of palliative care knowledge amongst health care workers is the underlying problem with health care throughout the world. Although all are capable of becoming certified in palliative life care, less than 1% of the 2.9 million registered nurses and 0.3% of the 954,000 physicians in the USA are certified in palliative care. And even though many people profess that palliative care services are available on a widespread basis in the USA--they are not being utilized (and are not adequately funded). The goal should be to fast track all heath care workers with palliative life certification.]
"Patients with advanced cancer are receiving increasingly aggressive care at the end of life (EOL). Although most patients with cancer prefer to die at home, 36% die in a hospital and 8% die in an intensive care unit (ICU). Nearly 25% of Medicare expenditures are spent on intensive care in the final month of life, despite limited evidence of improved patient outcomes." --Alexi Wright, MD et al
The above statement is from a recent clinical study and published in the article "Place of Death: Correlations With Quality of Life of Patients With Cancer and Predictors of Bereaved Caregivers' Mental Health." J Clin Oncol. 2010 Sep 13. These investigators examined the effect of quality of life (QOL) for patients treated in an intensive care compared to those who were in a hospice for treatment. Their CONCLUSION: Patients with cancer who die in a hospital or ICU have worse QoL [quality of life] compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Interventions aimed at decreasing terminal hospitalizations or increasing hospice utilization may enhance patients' QoL at the EOL [end of life] and minimize bereavement-related distress. The results were also revealed through the media, including this report by Medical News Today.
"In the United States, approximately 20,000 infants are born every year who have conditions that are ncompatible with life beyond the first year, or are in fact dying at birth." --Carol Botwinski, EdD, ARNP, NNP-BC
The above is a statement made in a recent study article titled "NNP education in neonatal end-of-life care: a needs assessment." MCN Am J Matern Child Nurs. 2010 Sep-Oct;35(5):286-92. These investigators evaluated the perceived end-of-life (EOL) care learning needs of neonatal nurse practitioners (NNPs). One thing that was determined in this survey of 136 NNPs is that "The majority of respondents did not consider their NNP education adequate in preparing them to provide EOL care to neonates and their families." The chief concern amongst respondents regarding their competency was "Thirty-one (22.8%) ranked delivery room decisions to resuscitate infants considered at edge of viability as the item for which they most wanted more training." [Probably what is most problematic is that too many of these 20,000 newborns are actually resuscitated in the delivery room--despite the recognition of their hopelessness.]
"Without an investment in training for all health professionals and ongoing support for palliative care, we will be “caring” for patients and families who feel abandoned, angry or overwhelmed by feelings of hopelessness. With proper support, awareness and training, all of us will be able to connect with terminally ill patients and their loved ones so that they feel sustained, rather than abandoned, at a time of great need." --David Kuhl MD PhD, Matthew B. Stanbrook MD PhD, Paul C. Hébert MD MHSc
The above statement is the article " What people want at the end of life." [CMAJ. Sept 13 2010.] This was a recent editorial in the Canadian Medical Association Journal (CMAJ) by Kuhl et al.
- Number of registered nurses in the USA; http://www.nursingadvocacy.org/faq/rn_facts.html
- Number of physicians in the USA: http://online.wsj.com/articl
- AP News 9-26-2010: $93,000 cancer drug; How much is a life worth? http://abcnews.go.com/Business/wireStory?id=11730994
- Human Rights Watch: Pain Report. "This 128-page report details the failure of many governments to take even basic steps to ensure that people with severe pain due to cancer, HIV, and other serious illnesses have access to palliative care, a health service that seeks to improve quality of life. As a result, millions of patients live and die in great agony that could easily be prevented."
- FrontLine television docementary film: Facing Death. http://www.pbs.org/wgbh/pages/frontline/facing-death/ A documentary about end-of-life care that clearly shows the common dillemmas dying patients and families face when treated in hospitals without palliative care and hospice involvement.
- The quality of death: Ranking end-of-life care across the world. An excellent 2010 report by the Economist Intelligence Unit (EIU) comparing EoL care among the top 40 countries. The study was commissioned by the Lien Foundation. The UK ranked #1 and the USA ranked way up at #9 in their study. lity of palliative radiology.
- Clearing the Smoke: The Science of CannabisClearing the Smoke is a PBS documentary that reveals how cannabis acts on the brain and throughout the body to treat illnesses and may very well prove to be a cure for cancer and other "incurable" diseases.
- San Diego-area suicide kit seller agrees to stop sale of devices. Another "angel of death," this time a 91 year old woman. This is a clear sign of the global problem with the needless neglect of pain and the widespread lack of palliative life services, as well as the incompetency amongst physicians and other health care workers in palliative life care and hospice.
- Position statement of the Board of the National Association of Neonatal Nurses (NANN): Palliative care of newborns and infants. [Adv Neonatal Care. 2010 Dec;10(6):287-93. PubMed]