Brown, Carlton G. PhD, RN, AOCN
Death is not the ultimate tragedy in life. The ultimate tragedy is depersonalization-dying in an alien and sterile environment, separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience things that made life worth living, separated from hope.
It is estimated that 42% of patients with cancer are not cured from their respective diseases.2 However, with proper treatment and optimal symptom management, some patients live many years after treatment and even more patients will receive a cure to their disease. Interestingly, 1 in 20 persons over the age of 20 in the United States is a cancer survivor.3 Unfortunately, the number of cancer survivors worldwide is less understood; it is certain that patients are surviving cancer across the globe. It is important to note that besides cancer, people die from other chronic diseases such as acquired immune deficiency syndrome, cardiac disorders, respiratory disorders, and neurologic disorders.
Longer survival and improved quality of life have been associated with palliative care.4,5 The World Health Organization defines palliative care as “…an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”6 Sometimes the terms “palliative care” and “end of life/hospice care” are used synonymously, yet there is a distinct difference between these 2 sets of words. Palliative care has many facets and should focus on pain and symptom management, spiritual, social, psychological, and emotional well-being in patients and families facing any illness.6 Palliative care can occur anytime a patient is suffering during a life-threatening illness, not just at the end of life. Not all episodes of palliative care are provided at the end of life. For instance, palliative care may focus on the elimination or management of a symptom such as nausea during treatment for a respective cancer. End of life or hospice care is a form of palliative care provided at the end of a person’s life, hopefully to improve quality of life and lesson symptom burden. This confusion in using the 2 sets of words interchangeably has created a significant deficit in the understanding and the acceptance of palliative care and end of life/hospice care when appropriate. According to Rowland and Schumann,7 physicians and other healthcare providers must be able to verbalize to patients and families the difference between palliative and hospice care, and most importantly, convey that patients undergoing palliative care can also receive anticancer treatment simultaneously.
This article will serve 2 important purposes. First, this article will look at some of the barriers that sometimes prevent offering adequate palliative care to patient and families when the care is needed most. Second, this article will present results in a simplistic manner from actual research studies, which helps make the case through evidence of the value of palliative and quality end of life care.
THE BARRIERS OF PROVIDING PALLIATIVE CARE
There are numerous barriers to providing high-quality palliative care. Some of these barriers seem consistent with all types of patients faced with life-threatening illnesses, whereas other barriers seem to be challenging in a particular group of patients, such as elderly patients,8 patients seen in acute care settings,9 and terminally ill patients.10 One of the major barriers for patients and families in receiving palliative care is in relationship to access to care and referrals provided by healthcare providers.9 Bradley and colleagues’11 study of 231 physicians in the United States revealed that cardiologists (40% referral) and pulmonologists and other subspecialty physicians (55% referral) referred terminally ill patients to hospice care less commonly than oncologist (68% referral). In another study, Schim and colleagues12 found that some registered nurses resisted hospice referrals as long as home care services remained adequate and that some of the nurses had limited knowledge of hospice referrals. These studies and others suggest that certain groups of healthcare providers have less knowledge and other barriers related to properly referring patients to hospice or other palliative care services. Ahmed and colleagues9 also found other barriers pertaining to some healthcare providers, which included lack of traditional training around palliative and end of life training, personal opinions toward hospice care, and managing patients’ and families’ fears and other feelings related to end of life.
It appears that some barriers to palliative care sometimes have a racial, ethnic, and cultural aspect. One study conducted in the UK noted that of the 1035 referrals to palliative care services, only 15 (1.5%) were for patients from minority ethnic communities.13 In another study of 27 doctors, it was noted that only 8.5% of hospice referrals were for non-white patients in area where approximately 19% of the population had black/minority makeup.14 Another barrier is that there appears to be a lack of awareness related to palliative care in minority ethnic communities.14
Another group of people where there seems to be specific barriers related to palliative care is in the geriatric population. According to Ahmed and colleagues,9 some evidence suggests that patients over the age of 65 are less likely to be referred to palliative care. Dixon and contemporaries15 noted that the specific reasons for nonreferral in this population included: age bias in referral of clinicians, failure to communicate information on palliative care to older people, lack of understanding of care options, and confusion about what could be provided. In a study of barriers to providing palliative care to older people in acute hospitals, Gardiner and colleagues8 found that health professionals identified particular barriers for this population. These barriers included attitudinal differences in the care of elderly patients and a focus of curative treatments within acute hospitals, which may not always be realistic.
This article has identified just a few of the numerous barriers associated with palliative care. These studies and others begin to shed light on the barriers that patients and those who care from them face in relationship to receiving and providing adequate palliative care. These barriers could potentially prevent patients from having proper access to palliative care resulting in more significant suffering, possible delayed death, and unresolved feelings by healthcare providers in relationship to the dying process. Next, this article will investigate some of the evidence or actual research data, which supports the case for early palliative care.
THE EVIDENCE FOR PALLIATIVE CARE
The Patient Perspective
An interesting study was conducted by Bakitas and colleagues5 and published in the Journal of the American Medical Association, which focused on palliative care in 322 patients with advanced cancer. Half of the patients (n=161) were randomly assigned to the Project ENABLE (Educate, Nurture, Advise, Before Life Ends) an advanced practice nurse-led intervention and the other half (n=161) were assigned to usual care. The Project ENABLE intervention consisted of 4 weekly educational sessions (problem-solving, communication and social support, symptom management, and advanced care planning and unfinished business) followed by a monthly follow-up session until the death of the study participant. Participants in the usual care group were allowed to use oncology and supportive care services without restriction. Those participants in the Project ENABLE intervention had higher quality of life (P=0.02), lower depressed moods (P=0.03), and a trend toward lower symptom intensity (P=0.06) when compared with those participants who received usual care. In addition, participants in the intervention who died during the study experienced higher quality of life (P=0.02), no differences in symptom intensity, and lower depressed mood (P=0.03) when compared with usual care. Also of interest, although not statistically significant, those in the intervention group had a median survival of 14 months, whereas those in the usual care group had a median survival of 8.5 months. This study is important as it suggests that nursing interventions such as Project ENABLE can significantly improve quality of life and mood, improve symptom intensity, and at the same time help patients to live longer. Perhaps most importantly, this study suggests that along with numerous benefits, there is no harm from a palliative care intervention such as Project ENABLE group. This study should provide impetus to all nurses and other healthcare providers to administer palliative care interventions to patients.
Temel and colleagues4 conducted what might be the most informative and innovative palliative care study to date. This randomized clinical trial examined the effect of introducing palliative care to patients early after a diagnosis of metastatic nonsmall cell lung cancer. In this study, 151 patients were randomized to either an early palliative care/standard oncologic care group (n=77) or standard oncologic care alone group (n=74). In the early palliative care group, special attention was provided to assessing physical and psychological symptoms, establishing goals of care, assisting with decision-making regarding treatment, and coordinating care based on the individual need of patients. Interestingly, patients assigned to the early palliative care group had significantly better quality of life as measured by the FACT-L scale when compared with the standard oncologic care [98.0 vs. 91.5 (higher scores indicate better quality of life), P=0.03]. Further, fewer patients in the palliative care group had depressive symptoms (16% vs. 38%, P=0.01). Perhaps most remarkably, patients in the palliative care group who received less end of life care, had median survival rates that were still significantly improved (11.6 mo vs. 8.9 mo, P=0.02). Similar to the Bakitas and colleagues5 study mentioned previously, patients who received some form of palliative care had longer survival plus improved quality of life and mood. Perhaps more importantly, this author is unaware of any studies where patients receiving palliative care have shorter survival rates, meaning that there isn’t evidence, which suggests that palliative care is not harmful to survival.
So here are 2 studies4,5 that have been presented in a simplistic manner so that healthcare providers can use these findings to make the case for them creating their own palliative care services. It is important to remember that these are actual studies presenting outcomes from actual patients. Still other studies tell us what patients and families want when it comes to palliative care and end of life services.
But what is it that patients with serious illness want in relationship to quality end of life care? Perhaps the best way to answer that question is to look at a study that potentially asked those relative questions. Singer et al16 conducted a qualitative study of perspectives of end of life care of 126 participants from 3 patient groups: dialysis patients (n=48), people with human immunodeficiency virus infection (n=40), and residents of a long-term care facility (n=38). The researchers used in-depth interviews to collect data and used content analysis to derive the major themes from those patients interviewed. In this study, the participants identified 5 major themes of quality end-of-life care, which include: (1) receiving adequate pain and symptom management, (2) avoiding inappropriate prolongation of dying, (3) achieving a sense of control, (4) relieving burden, and (5) strengthening relationships with loved ones. This study reminds healthcare providers of what is important to patients as they near the end of their life.
The Family Perspective
Yet it isn’t just patients who are unhappy with quality of life during palliative care treatment. Tolle et al17 conducted a study of 475 family caregivers who were interviewed 2 to 5 months after a loved one had died to identify barriers to optimal care of in a full range of settings in which death had occurred to their loved one. A majority of those interviewed (68%) noted that the loved one they cared for had a living will and another 93% said that they knew the preference for end of life care of the person they were caring for. Unfortunately, pain was a problem for some of the patients in this study, in that 34% of family respondents reported their loved ones experienced moderate to severe pain in the final week of life. Of further interest, patients who were hospitalized had higher pain levels than those who died in other locations such as nursing homes or at home.
Teno and contemporaries18 conducted another study of bereaved family members’ opinions of quality of end of life care in high and low usage intensive care units. In this study, opinions of decedent in high-intensity (n=365) and low-intensity (n=413) hospital service areas were compared in the areas of unmet needs, concerns, and rating of quality of end-of-life care in 5 domains (physical comfort and emotional support of the decedent, shared decision-making, treatment of the dying person with respect, and providing information and emotional support to family members). Family members of decedent who died in high-intensity hospital service areas reported less: quality of emotional support, shared decision-making, information about what to expect, and respectful treatment. An interesting finding was that 16.4% of family members of those who had died in a high-intensity service area felt their loved ones did not receive enough life-sustaining treatment when compared with 8.4% of family members of low-intensity hospitals (P=0.05). This particular finding potentially highlights that patients and families in high-intensity hospitals might have higher, unrealistic expectations of the end of life experience. This study should remind all healthcare providers that there are potential areas of weakness when it comes to quality end of life in patients who experience death in high-intensity hospital services. More focus should be given to these patients and their families to improve the experience.
The Cost of Quality Palliative Care
Evidence suggests that inpatient hospital care at the end of life is expensive and that this high cost of care doesn’t always equate to high quality care. Zhang and colleagues19 conducted the study “Coping With Cancer,” a longitudinal multi-institutional trial of 627 patients with advanced cancer. In this study, there was a comparison between cost of the hospital stay in the last week of life (in an intensive care unit, a hospice, or where life sustaining care such as mechanical resuscitation was provided) and patient’s opinions of the care they were receiving. Interestingly, these researchers found that the mean costs of care were $1876 for patients who reported end of life discussions compared with $2917 for patients who did not, a difference of approximately 36% lower among patients who reported end of life discussions (P=0.002). Further, the study suggested that patients with the most expensive care had worse quality of death in their final week of life. This study suggests that patients actually benefit from discussion of end of life with their healthcare provider and that higher costs do not always equate to better outcomes at the end of life. The study also suggests that some healthcare providers may be overtreating their patients in the final days and hours of life.
It is undeniable that there are barriers to providing palliative care. Further, recent research suggests there is value of palliative care for patients, families, and those providing this care. Specifically, the research suggests that the earlier a patient receives palliative care, the better outcomes they will receive. Also, studies in this paper suggest that there is no harm done when patients receive palliative care along with standard anticancer treatment.4,5 Finally, 1 study presented herein suggested that particular nursing interventions focused in palliative care did improve patient outcomes. For those naysayers of palliative care, it is hard to argue against evidence and actual research findings. Each healthcare provider can make the case for why palliative care is important for all patients by using this information about barriers to palliative care along with the research evidence presented herein.
1. Cousins N Anatomy of an Illness. 1983 New York Bantam Doubleday Dell
3. National Cancer Institute. Cancer prevalence statistics: approaches to estimation using cancer registry data. Bethesda, MD: National Cancer Institute; 2010. Available at http://srab.cancer.gov/prevalence/approaches.html
. Accessed March 4, 2011
4. Temel TS, Greer JA, Muzikansk A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733–742
5. Bakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA. 2009;302:741–749
7. Rowland K, Schumann SA. Palliative care: earlier is better. J Family Pract. 2010;59:695–698
8. Gardiner C, Cobb M, Gott M, et al. Barriers to providing palliative care for older people in acute hospitals. Age Ageing. 2011;40:233–238
9. Ahmed N, Bestall JE, Ahmedzai SH, et al. Systematic review of the problems and issue of accessing specialist palliative care by patients, careers and health social care professionals. Palliat Med. 2004;18:525–542
10. Rhymes JA. Barriers to effective palliative care of terminal patients. Clin Geriatr Med. 1996;12:407–416
11. Bradley EH, Cramer LD, Bogardus ST, et al. Physicians’ ratings of their knowledge, attitudes, and end of life care practices. Acad Med. 2002;77:305–311
12. Schim SM, Jackson F, Selly S, et al. Knowledge and attitudes of home care nurses toward hospice referral. JAMA. 2000;30:273–277
13. Fountain A. Ethnic minorities and palliative care in Derby. Palliat Med. 1999;13:161–162
14. Karim K, Bailey M, Tunna K. Nonwhite ethnicity and the provision of specialist palliative care services:factors affecting doctors’ referral patterns. Palliat Med. 2000;14:471–478
15. Dixon S, Fortner J, Travis SS. Barriers, challenges, and opportunities related to the provision of hospice care in assisted living communities. Am J Hosp Palliat Care. 2002;19:255–256
16. Singer PA, Martin DK, Kelner M. Quality end-of-life care patients’ perspectives. JAMA. 1999;281:163–168
17. Tolle SW, Tilden VP, Rosenfeld AG, et al. Family reports of barriers of optimal care of the dying. Nursing Res. 2000;46:310–317
18. Teno JM, Mor V, Ward N, et al. Bereaved family member perceptions of quality of end-of-life care in US regions with high and low usage of intensive care unit care. J Am Geriatr Soc. 2005;53:1905–1911
19. Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009;169:480–488
Copyright © 2011 Wolters Kluwer Health, Inc. All rights reserved.