Symptoms
Pain
Fatigue
Nausea
Appetite
Discomfort
Dyspnea
Sleep disturbance
Depression
Anxiety
Existential/psychic pain
Health care related
ICU stay
Chemotherapy at the end of life
Hospital death
Use of feeding tubes
Religion and spirituality
Religious practices
Pastoral care
Therapeutic alliance
Symptom Control
It has been repeatedly demonstrated that symptom control affects a patient’s QOD (Black et al. 2011; Hermann and Looney 2011). Symptoms are interwoven, and management of one symptom may worsen or improve another. For example, opioids may increase the risk of nausea and constipation and may cause delirium or “emotional numbness,” which may impair social interaction (Maciejevsky and Prigerson 2013). In this situation, QOD may be better served by minimizing opiates if the patient voices the desire to remain alert and oriented and is able to tolerate some degree of pain. Anxiolytics may be more effective than opioids in preserving a patient’s QOD when the pain has an intense emotional component (Veinante et al. 2013) and is aggravated by anxiety.
For effective symptom management, the distinction between physical pain and discomfort is essential (Maciejevsky and Prigerson 2013). Occasionally, one may have pain without discomfort and discomfort without pain. For example, a Catholic priest with metastatic prostate cancer felt that the pain from bone metastases allowed him to participate in the redemptive pain of Christ, and he tolerated the most atrocious pain with a smile on his face (Balducci 2008). Clearly, relief of pain would have worsened rather than improved his QOD, because it would have deprived him of a very meaningful spiritual experience. It is not uncommon for patients at the end of life to experience a generalized discomfort due to a combination of factors, such as fear of the unknown and concern about people left behind, even when physical pain is well controlled. Many patients can benefit from an open discussion of their concerns, pastoral assistance, or social work intervention for emotional concerns, rather than pain or antianxiety medications alone (Kirsten et al. 2014). Depression may be considered a “symptom hub” in the terminally ill. Depression may intensify physical and emotional pain which in turn may exacerbate depression (Pinquart et al. 2006; Mehta and Roth 2015). It is also important to distinguish depression that may respond to medication from depression related to existential pain (Balducci 2011), which may respond better to empathy and listening than to medications. In these situations, the management of depression requires a multipronged approach, including psychotherapy and in some cases psychiatric evaluation for psychotropic medications.
Fatigue is the most common end-of-life symptom for cancer patients (Black et al. 2011) and can be a major threat to QOD (Luciani et al. 2008; Tang et al. 2014). The management of cancer-related fatigue is problematic and controversial (Balducci and Fossa 2013). QOD may be preserved by helping the patient acknowledge the need for help with activities of daily living and the need for caregivers to demonstrate their love for the patient. Often caregivers feel helpless and frustrated when a patient refuses to accept their help.
Sleep disturbances include insomnia and alterations in circadian sleep-wake rhythm, and may represent an additional cause of fatigue, anxiety, and discomfort (Dahiva et al. 2013), as they affect more than 50 % of terminally ill patients with cancer. Patients should be encouraged to go to bed only when they are sleepy, to avoid long naps, and to engage in activities like walking and interacting with others, if only briefly. Educating patients about sleep hygiene is important; however, many sleep difficulties are related to anxiety, depression, and worry. Counseling is very useful to address these issues. Pharmacological treatment in general has a limited role, as the majority of these individuals are already overmedicated; however, medication for sleep may in some cases be required, especially at the end of life. Management of polypharmacy and elimination of drugs that are not strictly necessary may also help sleep disorders (LeBlanc et al. 2015).
Anorexia is common in cancer patients especially at the end of life, and questions about nutrition at the end of life and in relation to QOD are common. In general, anorexia seems to be more troubling to the caregiver than to the patient. A common perception is that starvation may kill the patient before the cancer does. This concern should be relieved, as it has been repeatedly demonstrated that hyperalimentation accelerates cancer growth in the absence of antineoplastic treatment (Balducci and Hardy 1987). Appetite stimulants including alcohol in small doses, progestins, and corticosteroids may improve the QOD of some patients by allowing them to enjoy a pleasant meal. In a randomized controlled study, a ghrelin synthetic derivative, anamorelin (Temel et al. 2014) improved the appetite and the nutritional status of patients with advanced cancer. If approved in the United States, this drug may represent effective management of anorexia.
4.4.1 Health Care-Related Issues
Place of Death and Aggressive End-of-Life Treatment
All studies agree on these facts: QOD is worsened by death in the hospital (especially in the ICU) and by chemotherapy at the end of life (Prigerson et al. 2015; Crocker et al. 2015; Jones et al. 2011; Zhang et al. 2012; Fukui et al. 2011; Steinhauser et al. 2000). Several authors have found that a patient has a better QOD in the comfort of his/her home (Prigerson et al. 2015; Crocker et al. 2015; Jones et al. 2011; Zhang et al. 2012; Fukui et al. 2011; Steinhauser et al. 2000; Teno et al. 2004; Collier et al. 2015; Fleming et al. 2015; Wright et al. 2010a, b). Among patients dying at home or in an institution, hospice care significantly improved QOD thanks to better symptom control (Teno et al. 2004). These data were obtained primarily from interviews of caregiver of patients who had died, but the conclusions need to be mitigated by a number of considerations.
Patients were more likely to die in the ICU if they asked for life-extending treatment up to the very last minute (Wright et al. 2010a). When death in the ICU is unavoidable, the patient’s QOD may be improved when health care providers strive to communicate with the patient and family. The Three Wishes Project (Cook et al. 2015) represents a successful example of this approach. In the few days preceding death, physicians and nurses working in a 21-bed ICU of a major hospital endeavored to fulfill three wishes that the patient and family recognized as particularly meaningful. The wishes, expressed in an informal conversation were varied, but essentially belonged to five categories: humanizing the ICU environment, paying a personal tribute to the patient, reconnecting with family members and friends, celebrating a ritual, and paying forward. This approach preserved the patient’s dignity, gave a voice to the family, and fostered compassion and empathy in the staff.
Studies reporting that chemotherapy worsened QOD may be slanted toward this conclusion, because they were focused on patients who died shortly after receiving chemotherapy. A number of patients who received chemotherapy in the same conditions might have achieved a more prolonged survival and a better quality of life. In other words, it might have not been established that the patients who eventually died and did not benefit from treatment were close to the end when they did receive chemotherapy, as predictions of impending death are notoriously unreliable (Rose et al. 2000).
Finally, and most importantly, the concept of home needs to be qualified. By necessity, all studies indicating that home was the ideal place of death involved patients with a home and a stable, loving family. It excluded the homeless, those with a conflicted or dysfunctional family life, and those where the family caregiver was torn by competing responsibilities, such as raising children and putting bread on the table in addition to taking care of the dying (Woodman et al. 2015). Also, a number of studies established that the concept of home for dying patients may be a dynamic one (Collier et al. 2015). Home indicates a place where the dying person feels safe and comfortable because he/she is surrounded by familiar objects and by loving people and is confident they will receive the best palliative care. Patients receiving end-of-life care in a facility rather than at home and assisted by skilled personnel are less likely to experience hospital admission at the end of life (Henson et al. 2015; Kaspers et al. 2013).
Clearly, end-of-life care may be influenced by cultural and religious beliefs. For example, for devout Muslims, it is the family’s responsibility to take care of a person at the end of life, and it is inconceivable that the person may die in any other place but home (Padela and Mohiuddin 2015).
Open communication between health care professionals and patients and families is essential to ensure that everybody’s goals of care are reconciled and respected in the treatment plans. It is desirable to avoid death in the hospital and in the ICU for patients whose disease is clearly terminal, but not at the price of overruling a patient’s desires. When a home is available and the family is able to manage the dying, home is the preferred site of death. The concept of home should be conceived in a dynamic sense, however, and ultimately home is the place where most patients feel safe and comfortable.
Tube Feeding
In general, the presence of feeding tubes at the end of life has been perceived as a barrier to QOD. The issue is controversial both from medical and ethical standpoints (Nowarska 2015). The problem hinges on the question as to whether nutrition and hydration increase discomfort in these patients. Not surprisingly, the clinical evidence is inconclusive (Gent et al. 2015; Wiffen et al. 2014). A reasonable approach to the issue is the following:
The patient and his/her health care surrogate have the right to request or refuse a gastric or a nasogastric tube for nutrition and hydration in any circumstance, according to the principle of autonomy.
In patients who have a terminal disease such as advanced cancer, are unconscious and unresponsive to treatment, and have no health care surrogate, it is reasonable to provide hydration through an NG tube if it appears to decrease discomfort from dehydration. In view of the lack of any evidence that nutrition and hydration in these circumstances are beneficial, an NG tube should not be routinely inserted.
Religion and Spirituality
Epidemiological studies suggest that belonging to a religious community is associated with increased life expectancy, improved health and function, and more successful outcome of substance dependence treatment (Balducci and Mayer 2001). In a recent white paper from a consensus conference, it is stated that palliative care should include spiritual and religious domains, and every member of the care team should be able to recognize issues related to these domains (Puchalski et al. 2009). Failure to do so may jeopardize the patient’s QOD and ultimately the success of palliative care. The professional properly trained to address these issues is the chaplain on the team who has undergone clinical pastoral training (CPT).
Despite the fact that many patients and families consider spiritual assistance and pastoral care at the end of life desirable (Zhang et al. 2012; Peteet and Balboni 2013), the evidence that these interventions are beneficial is inconclusive (Puchalski et al. 2009; Candy et al. 2012; Cobb et al. 2012). This is not surprising, given the large number of variables involved. In part, the confusion may derive from the lack of clear distinction between religion and spirituality. Religion involves the adherence to beliefs shared by a community, commonly expressed by rituals and common prayers (Balducci and Mayer 2001). The concept of spirituality is more vague and refers to that which gives an individual meaning in life without necessarily embracing a specific creed. A recent review of the literature (Stephenson and Berry 2015) identified five attributes of spirituality: meaning, beliefs, connecting, self-transcendence, and value. It is not clear whether any of the instruments available to assess these domains reflects the complexity of the issue, as the spiritual attributes are interwoven. By necessity, the data on spirituality and QOD are fragmented and in part anecdotal.
Another unsettled issue is the matter of which professional is qualified to provide spiritual and religious care, the minister of the religious community to which the patient belongs or a member of the palliative care team. The CwC study showed that patients receiving their religious support from a community minister were less likely to enroll in hospice, more likely to receive aggressive treatment for their cancer at the end of life and die in the ICU (Balboni et al. 2013). The reverse was true for patients who received religious and spiritual support from the medical team (that included a chaplain and a social worker). This discrepancy is puzzling, and one may suppose that ministers in the religious communities may have sometimes unrealistic expectations of health care providers and their ability to prolong life. They may also have the erroneous belief that cessation of treatment and referral to hospice imply the patient and medical team are “giving up.” The hope for a miracle cure may influence this attitude. More studies of this issue are necessary to confirm these initial data and also to study the effects on QOD of these different attitudes toward and approaches to end of life. Sharing the concept of “letting go” rather than “giving up” is one that improves the QOD for many patients and families.
One may anticipate several benefits at the end of life from religious and spiritual care, including fostering hope (Hawthorn 2015), facilitating forgiveness (Wittemberg et al. 2015), promoting communication (Wittemberg et al. 2015), implementation of prayer (Tomkins et al. 2015) and other rituals, and the discovery of meaning of life (Stephenson and Berry 2015). In addition, a spiritual perspective may help ameliorate caregiver stress and make caregiving more effective, rewarding, and meaningful (Kim et al. 2011).
One may also be concerned about the potential negative effects of spiritual and religious intervention (Van Laarhoven et al. 2012), which may include unrealistic expectations from medical care, although spiritual care may help to address issues like guilt and fear of the afterlife.
One may draw the following conclusions from this discussion:
Religion and spirituality are human domains that may influence all aspects of health care, including QOD.
Health care providers may have limited influence on these dimensions; however, they cannot ignore these dimensions in ministering to the dying. A number of patients decry the failure of the medical team to address these aspects of care.
Religious and/or spiritual intervention may be helpful in fostering a sense of meaning, accomplishment, and fulfillment in the dying. This intervention may also help patients accept death with grace and may render the endeavors of family caregiver more meaningful and rewarding.
Spiritual and religious interventions may have different effects on end-of-life care. In some cases, it may promote aggressive treatment; in others, it may promote acceptance of death. There are no data to determine how these different effects influence QOD.
Every member of the treatment team should be able to recognize spiritual and religious issues and refer the patient to the proper professional. It goes without saying that the focus of this communication should be the patient’s beliefs, and in no circumstances the provider should attempt to prevail on these beliefs.
A recent study showed that the management of religious and spiritual issues is more effective when these issues are addressed at the beginning of patient-physician relationship (Roscoe and Tullis 2015). A simple instrument called FICA (Faith, Importance, Community Assessment) is designed to obtain this information and may be utilized in the course of later care (Puchalski et al. 2009).
Therapeutic Alliance
In addition to effective communication, therapeutic alliance (Mack et al. 2009) plays a crucial role in the care of the terminally ill patient and family. Therapeutic alliance preserves the dignity of the patient and is based upon empathy, respect, open-mindedness, acceptance, availability, and humility. These elements are included in “The Human Connection (THC) Scale” (Mack et al. 2009) – a validated scale to assess therapeutic alliance. High scores in THC were associated with higher level of QOD among patients dying with cancer. The palliative care team is instrumental in establishing the therapeutic alliance, and the patient benefits from the ability to engage in life review at the end of life. Relating one’s history is an important part of bringing one’s life to a close. It helps affirm one’s life has had meaning and for some individuals may help come to terms with lost relationships and regrets. Hospice social workers are uniquely trained to assist patients with these issues and work with families at the end of life.
Controversial Issues
The previous discussion revealed a number of controversies in the care of the dying. While there is general agreement that spiritual and religious assistance may improve QOD, there were questions about the best way to provide it.
In this section, we examined two issues that are controversial: whether to fully disclose the patient’s status and whether palliative sedation may improve QOD.
End-of-Life Discussion
Therapeutic alliance is one pillar of QOD, and trust is the pillar of therapeutic alliance. Clearly, it behooves the practitioner to provide honest, clear, and complete information when answering the patient’s questions. The issue is how to deal with the patient who is reluctant to discuss prognosis or avoids it completely and how to formulate answers to questions in a way that does not cause stress, depression, and withdrawal. It is also important to recognize that the family may want to shield the patient from a honest discussion even when the patient requests it.
The literature suggests that end-of-life discussions are not stressful for the majority of patients (Emanuel et al. 1999–2004) and that they improve QOD, patients’ ability to cope, medical care near death, and caregiver bereavement (Wright et al. 2008; Lee et al. 2013; Balducci 2012). End-of-life discussion more than 30 days prior to death was associated with decreased use of aggressive therapy near death in terminal cancer patients, which may have led to improved QOD (Mack et al. 2012). A randomized controlled study examined the value of palliative care since the beginning of treatment with chemotherapy in patients with metastatic lung cancer. The study showed that early palliative consultation which included an honest discussion of prognosis and treatment goals was associated with improved QOL, improved survival, decreased incidence of ICU death and of third line chemotherapy, and reduced cost (Temel et al. 2011).
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