Hospice/Palliative Care: Concepts of Disease and Dying
10.2 Concepts of Disease and Dying
Three main factors infl uence disease and death concepts: beliefs, education, and religion.
10.2.1 Beliefs and Education
Patient concepts and beliefs about disease, treatment, providers, and death (sum- marized in Table 10.1 ) can infl uence use of clinical services and their outcomes.
These beliefs differ by ethnicity and they may contribute to the disparities observed for palliative and EOL care. However, differences in beliefs have not yet been fully investigated [ 24 ]. The Self-Regulation Model ( SRM ) theorizes that action patients
take to solve their health problems are infl uenced by their conceptualization of the disease [ 24 ]. According to this model, representation of the disease consists of the following fi ve components: identity (e.g., interpretation of cancer symptoms and labels attached to the disease), timeline (duration and trajectory of cancer), cause, consequences (perceived impact of cancer), and control (extent to which cancer can be controlled or cured). For instance, in the case of American Indians they may be reluctant to report symptoms (shortness of breath, vomiting or pain) due to fear that disease is worsening; or they may not sign a “Do-not-resuscitate” (DNR) because they think that is genocide (identity, cause, and consequences) [ 25 ]. These mental representations of illness activate behavioral responses, infl uence treatment deci- sions, and guide coping strategies.
Disparity in cancer treatment and palliative care are well documented but the mechanism underlying these disparities is not fully understood. A survey among minorities (Hispanics and African-Americans) in New York demonstrated that fatal- istic beliefs (is part of God’s plan, bad things are meant to be) potentially affecting cancer treatment were more common among both minority groups. African- American patients were more likely to believe that surgery might cause cancer to spread and both groups were more likely to have misconceptions about advance directives (bet- ter to have family make decisions) and hospice care (is for people who will die in a few days) as compared to nonminorities. Further research is needed to assess the impact of these beliefs on decisions about cancer care and patient outcomes [ 26 ].
Another factor that infl uences disease and death concept is education. For instance, video-based [ 27 ] community-based forums [ 28 ] and psychosocial inter- vention for caregivers [ 29 , 30 ] help inform Hispanics about advance directives and EOL care of advanced dementia [ 31 ]. News coverage (magazines and newspaper) has been shown to infl uence cancer treatment decisions, as well as other highly personal health behaviors. Fishman and colleagues demonstrated that African- American news media are less likely than mainstream news media to portray nega- tive cancer outcomes and EOL care [ 32 ]. Therefore, using media (video or web-based) news coverage and community outreach are important and effective ways to foster caregiver’s public health education in EOL issues.
10.2.2 Religion
Patients, particularly ethnic minorities, rely upon religion and spirituality as an important means to interpret and cope with illness, thus shaping their disease con- cept. Spiritual coping decreases anxiety related to death [ 33 ], improves quality of life, and impacts medical decision-making near death [ 34 ]. Religion may exacer- bate as well as ameliorate death fears by contributing to guilt and fear of punish- ment versus the hope of forgiveness [ 33 ]. A high quality observational study showed that ethnicity and intrinsic religiosity (reported by patients) were the only individual predictors associated with approach acceptance of death. When controlling for other variables, Caucasian patients and those with greater intrinsic religiosity
reported more comfort approaching death (vs. African-Americans with greater recourse to escape acceptance). However, participants with greater intrinsic religi- osity, surprisingly, were more likely to avoid the topic of death. This diversity in the experience of religiosity underscores distinction between patterns of positive and negative religious coping [ 33 ].
From the perspective of religious communities the concept of disease and death is interesting and heterogeneous. For example, within the major movements of Judaism (Orthodox, Conservative, and Reform) all share an intimate connection to tradition and culture; however, they may vary in daily practice, ritual observance, and interpretation of Jewish law. Jewish law refers to terminal illness or a life expec- tancy of less than 1 year, as tretfah . When the patient has no more than 3 days patient is in the state of goses (actively dying). Jewish law forbids shortening the life time span of a goses as well as to hasten death. This situation can cause ethical dilemma for pain management and physical care between the clinical, professional, and religious perspectives [ 35 ]. However, Judaism recognizes that all life is fi nite and, as such, its teachings are compatible with the principles of EOL care as they are currently practiced [ 36 ].
For Catholics life and health are ‘a gift of God’ and illness and death are ‘in God’s hand,’ therefore, nutrition and hydration are ordinary means of maintaining life, unless the patient is terminally ill and approaching death [ 37 ]. Both Catholics and Evangelicals see death as an elevation to eternity and the passing of the spirit from the body into heaven [ 38 ]. On the other hand, Buddhism defi nes death as a process that occurs after the last breath, when the subtle energies of the body draw toward the heart area and reincarnation may occur from each life. Meditation is one of their religious practices widely used by professionals to inspire total awareness of the present moment as a way of reducing stress [ 39 ]. Islam stands for surrender to the will of God; therefore, illness and death are to be borne with patience and prayer, as part of God’s plan. When a person is dying, family and friends gather around the bedside to escort the person into the next life; and then the body needs to be reverently cleansed. Among the pillars of Islam there is the rule of prayer and the Ramadan, both of which need to be kept in mind while providing EOL care [ 40 ].
This information about religions should serve the healthcare provider as a means to inquire further information about patients’ priorities during EOL care .
10.2.3 Death and Dying
The original discourse on death emanated from the church; however, the twentieth century saw a shift to modern medicine that describes hospitals as institutions that value saving lives and favor acute care. Consequently, nowadays US culture denies and fears death. Examples include expressions such as “he or she passed on” or “he or she is at rest,” rather than saying “he or she died” [ 6 ]. A recent systematic review of 13 articles demonstrated the lack of consensus defi nitions at EOL, including, actively dying (the hours or days preceding imminent death), EOL, terminally ill
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 ].