Palliative Care and Pain Management at the End of Life ___________________________________________
Knowledge and Attitudes of Patients, Families, and Physicians Physicians have reported that they delay discussions of palliative care and hospice because they fear the reaction of the patient and/or family [32; 33]. Negative reactions are grounded in a lack of accurate knowledge about palliative care and hospice. According to two polls conducted in 2011 (800 adults in one poll and 1,000 adults in the other), 70% to 92% of respondents were not “too” or “at all” familiar with the term palliative care [124; 125]. Enhancing the public’s knowledge can improve access to pal- liative care: the 2011 polls showed that once palliative care was appropriately defined, 92% said they were likely (63% “very likely” and 29% “somewhat likely”) to consider palliative care for a loved one who had a serious illness and 96% said that it was important for palliative (and end-of-life) care to be a top priority for the healthcare system [124; 125]. Hospice is a more familiar concept to the general population. One of the polls showed that 86% of respondents were familiar with the term hospice care, and other studies have indicated that approximately half of patients with a life-limiting illness know what hospice is [125; 126]. Although people may be familiar with the term, many believe several myths about hos- pice; for example, that hospice is only for old people, is only for people with cancer, is for people who do not need a high level of care, is used when there is no hope, and is expensive [127]. Several other factors contribute to negative feelings about hospice [80; 88; 128]: • Denial or lack of awareness about the severity of the illness • Not wanting to “give up” • Fear of abandonment by the family physician • Perception that the patient will not receive adequate medical services • Interpretation of hospice referral as a cost-savings measure When initiating a discussion about palliative care and hospice, clinicians should always first ask the patient if he or she has heard of either term and, if so, to describe his or her experience and knowledge [129]. Guidelines on communicating in the end-of-life setting note that clinicians must “clarify and correct misconceptions” about palliative care, especially emphasizing that such care is not limited to people who are imminently dying [117]. Clinicians should also address the factors that act as barriers to hospice by explaining that the goal of hospice is to die naturally—in the patient’s own time, not sooner—and by ensuring that patients and families are fully informed about the prognosis, understand that the physician will be available for care, and know that routine care will continue [98; 130].
Researchers continue to evaluate prognostic variables to estab- lish criteria for prognosis, especially disease-specific criteria. In its guidelines for palliative care, the Institute for Clinical Systems Improvement (ICSI) distinguished between the clini- cal indicators that should prompt palliative care discussions and those that should prompt hospice referral ( Table 5 ) [113]. According to the ICSI, “all hospice is palliative care, but not all palliative care is hospice” [113]. This difficulty in determining prognosis can have a negative impact on the appropriate timing of hospice referral and the degree of benefit to be derived. Although the use of hospice has increased over the past decades, the timing of referral has not changed significantly since the mid-1980s [114]. The aver- age length of hospice care is much lower than the six months allowed by the Medicare benefit; in 2022, the average length was 95.3 days, and the median duration (a more accurate reflection because it is not influenced by outliers) was 18 days [1]. In addition, approximately 25% of patients died (or were discharged) within only five days [1]. Studies have indicated that the benefits of hospice increase as the duration of care increases, and such services as bereavement counseling, pallia- tive care, and respite for caregivers is best when hospice care is provided for four to eight weeks, a longer period of time than the median stay [59; 115]. Longer durations of hospice services are also linked to family members’ perceptions of the quality of care. According to the findings of 106,514 surveys from 631 hospices in the United States, 11% of family members thought their loved one was referred “too late” to hospice; this perception was associated with more unmet needs, higher reported concerns, and lower satisfaction [116]. In contrast to the restrictions on access to hospice, there are no restrictions on access to palliative care. Referrals for palliative care should be made on the basis of actual or anticipated needs at any time during the disease continuum; referrals should not be made on the basis of prognostic models [81; 99]. Referrals for specialist palliative care should be made when treatment goals change from curative to palliative [117; 118]. A consensus report from the Center to Advance Palliative Care provides guidance for identifying patients with a life-limiting illness who are at high risk of unmet palliative care needs [118]. The report includes criteria for referral for palliative care assessment at the time of hospital admission and during each hospital day ( Table 6 ) [118]. Experts in nonmalignant life-limiting diseases are calling for earlier palliative care consultation. Such consul- tation before implantation of a left ventricular assist device as destination therapy is recommended, as it has been shown to improve the quality of care and advance care planning [119; 120]. Guidelines for renal and respiratory diseases note that all patients with these diseases should be offered palliative care services, and the integration of palliative care specialists into liver transplantation teams has been suggested [121; 122; 123].
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MDCA1525
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