Hospice/Palliative Care: Concepts of Disease and Dying
10.3 EOL Preferences
and terminal care (share similar meaning: progressive life-limiting disease with a prognosis of months or less). NIH State-of-the-Science Conference Statement added two other dimensions to the defi nition for EOL, namely, impaired function and increased symptom burden requiring higher levels of care, both of which are related to a shortened survival and progressive disease. Figure 10.2 shows a concep- tual framework that may help better explain these concepts [ 41 ].
In any discussion about death, suffering often is used simultaneously and is defi ned as the stress that occurs as a result of losses, including loss of family, pos- sessions, roles, friends, future, and loss of function [ 6 ]. Nursing has been a pioneer in developing models and programs to help patients and families cope with dying process. For instance, the respectful death model is a holistic and research-based model describing the establishment of a therapeutic relationship with the dying patient and his or her family and listening to and incorporating their stories into the care plan [ 6 ]. Another pivotal work has been the book “On Death and Dying” by Dr.
Elizabeth Kubler-Ross. This describes the fi ve stages of dying patients in terms of coping mechanisms at the time of a terminal illness: denial, anger, bargaining, depression, and acceptance [ 42 ].
support system) in accessing effective EOL care [ 43 – 46 ]. This section will describe the reality and attitudes of different ethnicities toward aggressive therapy, place of death, and decision-making and advance directives.
10.3.1 Aggressive Therapy
Patient factors found to be independently related to having a positive attitude toward use of life support were low education, ethnicity, gender, income, and personal experience with withholding and withdrawing care [ 47 ]. Moreover, patient factors independently associated with not wanting to discuss DNR included being non- African- American, not having advance directives, good prognosis, and quality of life and desire for no disclosure [ 48 ]. Clinician factors not favoring intensive EOL care include, physicians with more clinical experience, routinely working in Intensive Care Unit (ICU) and of similar ethnic origin of patient [ 49 ]. Use of aggres- sive therapy at EOL is directly related to higher expenditures [ 50 ] and decreased hospice use [ 51 ]. Patient’s characteristics (such as Hispanic or African-American ethnicity, decline in function, and certain chronic diseases, e.g., diabetes) explained 10 % of overall variance in aggressive therapy preference after controlling for regional characteristics [ 50 ], including high religious coping [ 52 , 53 ]. Hence, cofounding sociocultural variables do not fully explain minorities’ preference for intensive treatment [ 54 ]. For example, an expansive patients’ perspective of future time was related to greater desire for aggressive treatment [ 55 ]. Despite differences in aggressive therapy among African-American, Hispanics, and Whites, general data showed that noncancer patients were treated more invasively than patients with cancer or dementia, independent of race/ethnicity, and this may have been due to the increased uncertainty of predicting mortality for noncancer patients [ 56 ]. Further, the majority of observed differences in terminal ICU use among African-American and Hispanics were attributable to their use of hospital site and higher ICU use rather than to racial differences in ICU use within the same hospital [ 57 ]. Hence, patients’ perspective of future, noncancer diagnosis , geography (hospital site), and availability of ICU explained better patients’ preference toward aggressive therapy than ethnicity .
10.3.2 Place of Death
Qualitative data from UK showed that Chinese older adults preferred hospital treat- ment and death (vs. EOL care at home) because of beliefs about ‘contamination’ of the domestic home by the dying and dead body [ 58 ]. Death in hospice was far less common for cancer patients born outside UK (e.g., China and Africa) and authors attributed this to inequity in access to and availability of specialist palliative care services [ 59 ]. Similarly, inpatient death in California was more common among
Asian (54 %), Hispanic immigrants (49 %, as compared to US-born Hispanic 45 %), and African-American (45 %). Age and nursing home residence were the most important predictors of in-hospital death and ethnicity was strongly associated with the probability of in-hospital death. However, authors concluded that ethnic differ- ences are substantially explained by other characteristics, such as age, marital sta- tus, nursing home residence, and distance from the hospital [ 60 , 61 ].
Accordingly, in Palestine despite the fact that the Palestinian culture is one of the cultures that respect and care for the elder, but at the EOL, when the load of symp- toms is high, most of the patients are cared for at hospitals, and usually die there, because the families are not able to care for their relative, and as there is no system for home care available or affordable for them [ 62 ]. A national survey demonstrated that for patients and bereaved caregivers it was more important to be free of pain, being at peace with God and having family present than the place of death , whether at home, nursing home, or inpatient unit [ 63 ]. Once again, data suggests that various factors other than ethnicity predict inpatient place of death, namely, patients’ care- giver support, socioeconomic, and marital status. An interesting question would be when it is really a disadvantage for diverse elders to die in the hospital and if this is among their priorities or not. Therefore, it is imperative to assess patients’/caregiv- ers’ characteristics, priorities, and hopes early in the plan of care .
10.3.3 Decision-Making (Family vs. Patient-Center) and Advanced Directives
Epidemiological and qualitative data strongly demonstrates ethnic differences in advance care planning. A chart review of 3400 ICU patients revealed that as com- pared to White, nonwhite (African-American, American Indian, Asian, Pacifi c Islander, or Hispanic) patients were less likely to have living wills (OR 0.41, 0.32- 0.54), more likely to die with full support (OR 1.59, 1.30-1.94), and more likely to have discord documented among family or with clinicians (OR 1.49, 1.04- 2.15) [ 64 ]. A large secondary analysis of the 2007 Minimum Data Set (MDS) revealed that across different types of advance directives (living will, do not resuscitate, do not hospitalize, and power of attorney), African-Americans, Hispanics, and Asian nursing home residents were signifi cantly less likely to have these documented in their fi les [ 45 , 65 ]. As compared to White, African-American participants preferred to include more family and spiritual leaders, requested spiritually focused recom- mendations, and tended to value the protection of life at all cost during EOL discus- sions [ 66 ]. In another focus group study, Hispanics indicated that ‘dying with dignity and good care,’ ‘not having to suffer and someone having to change your diapers’ were the greatest concern [ 67 ]. On the other hand, a large survey among Hawaiian Americans demonstrated that EOL preferences are similar to US main- landers. Therefore, no matter the ethnicity, the clinician should ask patients directly about their preferences at the time of diagnosis of serious illness as a fi rst step toward improving EOL care [ 68 ].
However, Johnson and colleagues explored the reasons behind such differences among African-Americans and Caucasian demonstrated that none of these factors alone (preference for aggressive care, spirituality, distrust, and discomfort about death discussion) completely explained racial differences in possession of an advance directive or beliefs about hospice. When all of these factors were com- bined, race was no longer a signifi cant predictor of advance directive completion [ 69 ]. Similarly, ethnicity was not predictive of prior appointment of a health care agent and a proxy assignment [ 70 ]. According to the Initiative to improve Palliative and EOL care in the African-American Community, neither the historical legacy of social injustice and unequal treatment nor the spiritual perspectives of death and dying are predictive in determining an individual’s preference for EOL care.
Existence of cultural mistrust among African-American patients is largely unsub- stantiated and such generalizations result in an unfair and perhaps inaccurate por- trayal of African-Americans as inherently mistrustful [ 71 ]. Findings from an observational study of 147 Latino elders in Los Angeles showed that if seriously ill, 84 % of participants would prefer medical care focused on comfort measures (refuse a ventilator, 74 % or feeding tube, 71 %) for the remainder of their life. Despite preference for comfort-focused EOL care, only 24 % of participants had an advance directive [ 72 ]. Having the conversation with a clinician about EOL care preferences [ 73 ] along with greater acculturation, education and desire for autonomy were asso- ciated with a tendency toward an advance directive completion. The majority of older Latinos in this sample also preferred a family-centered, group decision- making model with limited patient autonomy [ 72 ].
These studies show that EOL care depends not much so on patients’ care prefer- ences or their advance directives but rather on the local health care system variables like institutional capacity and individual doctors’ practice style. These two variables also explain the tremendous regional variation in Medicare spending on patients at EOL. A study looked at doctors’ personal EOL preferences and found ethnicity dif- ferences (in descending order White = African-Americans > Asian > Hispanics in favoring advance directives). This raises questions about why doctors continue to provide aggressive EOL care for terminally ill patients but personally forego such care for themselves [ 74 ].