What does it mean to be at the end of your life? Common sense would say that end of life is the period of time before you die. However, none of us know when we will die. How then, can we understand when the end of life happens? Researchers depend on two definitions. First, end of life is defined by Medicare and Medicaid as a person who is in a six month or less period before their death. The government uses this definition to decide who qualifies for hospice, particularly when the government is paying for the care. A second definition focuses on end of life as a physical process. End of life is the period preceding an individual’s natural death from a process that is unlikely to be arrested by medical care. (Hui et al. 2014) The end of life is a fertile ground for social problems. End of life decisions raise issues of culture, choice and values. End of life options also vary depending on where you live or how much money you have

10.3.1 End of Life Decisions

Advancements in medical technology over the last several decades have profoundly changed every aspect of healthcare. New diagnostic procedures and the increase in the effectiveness of treatment options have led to an unprecedented power to intervene in the trajectory of disease and forestall eventual death. The resulting technical imperative and the belief that new technologies must be developed and accepted for the good of society continue to shape healthcare and end-of-life decisions. But these ongoing advancements also raise questions as to when, how, and ultimately, if, medical intervention should be undertaken in various instances of disease and injuries.

In the United States, technology has become a symbol of progress. Progress in medicine is often measured in terms of its technological advancements and increased curative functions. And similarly, as patients become more aware of new treatment options, they often pressure healthcare providers to apply the latest technology based on the belief new is better. Therefore, healthcare providers can feel driven to use new technologies and medication to do everything possible to extend life and forestall the inevitability of death. If it is possible to keep people alive using immunotherapy to treat autoimmune diseases, it must be done. If it is possible to extend life by using transplanted organs, it ought to be done.

This rapid introduction of new technological advancements also poses a challenge for society. The ability to develop new medical treatments can occur faster than people’s ability to decide what they think about it and to understand the potential outcomes. This results in cultural lag, when material culture changes faster than non-material culture, and their is a struggle to process the meaning and implications of the changes in order to adapt.

 In this case, there is cultural lag as society considers the social and personal implications of choosing or not choosing to accept the use of new medical treatments. For instance, a cancer patient may have access to a specific new drug or treatment that can extend life. But is gaining a few weeks or months’ time worth it when there can be significant financial costs, unpleasant or debilitating side effects, and a meaningful negative impact on the quality of life, just because it can be done and is available?

Belief systems strongly influence end-of-life decisions and preferences. Social, cultural, and religious beliefs shape a person’s reaction to the dying process and affect decisions concerning healing, suffering, and any intervention in the dying process. Therefore, the evaluation of the potential advantages and disadvantages of end-of-life medications and treatments is impacted by social and cultural meanings of life. Decisions concerning the use of new medications and medical technology are affected by the perceived value and purpose of human life. This can include the perceived cause of the end-of-life situation. Is the current situation occurring a result of the individual’s bad behavior, because of supernatural forces, or is it part of the natural cycle of life? Cultures with more of a collectivist orientation may include the impact efforts to extend life have on others, how it affects the ability to perform prescribed social roles, and the financial impact on others as part of the decision-making criteria.

Beliefs grounded in a sanctity of life orientation strongly emphasize the basic duty to preserve life. This perspective is often grounded in cultural and religious tenets that explain life as being a sacred gift granted to humans accompanied by a requisite responsibility to care for the body. Such an orientation may lead to a preference for using all available medical options to live as long as possible. Alternately, others may focus more on the quality of a person’s life. A quality of life perspective argues that when life is no longer meaningful, the obligation to preserve life no longer exists. Although medical technology may be able to extend life, the human experience of living is more important than simply keeping the body medically functioning. From this orientation toward life, the emphasis is placed on the ability to live with dignity and purpose. And decisions concerning the use of end-of-life medical interventions are shaped by the intentional consideration of the distinction between the quantity of life and the quality of that life.

10.3.2 End-of-Life Care Options: Rural Challenges

10.3.2.1 Palliative Care

Death is an unavoidable event in the life course. We are born. Eventually, we will all die. But with the advancements in modern medicine and its ability to manage disease and prolong life, dying has increasingly become an elongated process rather than a sudden specific event. The dying process is now often the end result of chronic disease and/or age-related physical decline that can be accompanied by pain and distressful symptoms. Palliative care is often used to improve the quality of life and relieve pain and suffering during end-of-life care. As a treatment strategy, palliative care is specialized medical care for people living with serious illness and medical conditions such as heart failure, cancer, or neurological disease. The focus is on anticipating, preventing, and treating physical, psychological, and emotional pain and relieving symptoms. The use of palliative care is not dependent on a specific diagnosis or projected prognosis, but as the end-of-life approaches, the role of palliative care intensifies.

Social location variables such as age, gender, socioeconomic status, and geographic locality affect all aspects of a person’s life. The variability in access to resources and services based on these factors has a significant impact on the dying experience. For example, U.S. rural populations tend to be older, have higher mortality rates, be more likely to suffer from chronic diseases, and be disproportionally poorer than urban populations, but they have less access to palliative care (Rural Health Data Hub). Data also indicates that caregivers for the medically fragile who live in rural areas often spend more time providing care and are more likely to care for multiple people than in urban or suburban areas. This is especially concerning considering the role palliative care programs can play in supporting those who provide daily care giving and support for loved ones. (Center to Advance Palliative Care, 2019)

Readily available access to palliative care has advantages for the patient, those who provide daily care, and the healthcare system. Community-based palliative care programs lower healthcare costs and reduce the need for hospitalization (Weng, Shearer, & Grangaard Johnson 2020). Early diagnosis of care needs and promptly addressing medical needs before hospital care is needed provide obvious benefits for the patient. The availability and accessibility of support services for care providers is also critical to the overall well-being of the patient and the caretakers. In addition, minimizing hospital visits helps bring down overall medical costs and conserves system-wide medical resources at a time when the healthcare system is struggling to control escalating costs.

Figure 10.9 Access to health care services in rural areas is limited compared to bigger cities. The people in Lincoln County Oregon rely on the Coast Guard for ocean rescues, and private air services move critically injured and dying people to the Willamette Valley for more complex care. When lawmakers proposed cutting funding to the local Coast Guard helicopter, residents protested, and funding was restored.

Rural areas face disproportionate barriers in providing palliative care options. Financially, the sheer volume of patients in urban areas is better able to support the resource allocation needed for hospital and community palliative care programs. Larger patient numbers can financially support the viability of healthcare teams specifically designated and trained to provide palliative care. While more sparsely populated rural areas lack sufficient patient numbers and the necessary medical resources to maintain palliative care programs. These areas are hindered by geographically dispersed patients, significant travel and driving time, the lack of rural hospitals and medical specialists, and the difficulty in recruiting and retaining trained healthcare providers. (Wenget al 2020)

10.3.2.2 Nursing Care and Home Health Care

The scarcity of nursing care facilities and hospice services in rural areas pose barriers to accessing end-of-life care assistance with medical and personal needs. Nursing care facilities (sometimes referred to as nursing homes) are residential centers designed to provide health and personal care services for those who can no longer care for themselves. These facilities provide a broad array of services dependent upon the specific focus of a facility. Levels of service can range from assisted living settings where residents may need assistance with meals, help with medication, and housekeeping to skilled nursing care facilities where the focus is more on medical care, including rehabilitative services (e.g. physical, occupational, and speech therapy), and complete support with daily activities.

These facilities can be essential end-of-life options, but for rural residents, they are often not available. Rural nursing care facilities face many of the same challenges as rural palliative care programs. Rising operational costs due in part to the lower number of patients, distance to resources, and difficulty in finding and retaining trained staff have resulted in a high rate of nursing facility closures across rural America. Rural residents who must often leave their community, family, and friends to access these services face the stress of relocation and isolation because of fewer contacts with loved ones.

Some end-of-life medical and social service needs can be addressed by accessing various home health agencies that provide medical services intended to allow patients to stay in their homes and to reduce avoidable hospital admissions. Home health care can provide medical treatment such as administering medication through IVs and injections, wound care, monitoring of health conditions, and providing immediate referrals for emerging health conditions. They can also facilitate connections to other essential non-medical care such as social services or assistance with daily living by home health aides.

Figure 10.10 Telemedicine can provide more health care services to rural patients and others who may lack access to transportation. However, internet access and technology skills are often limited in rural areas, as noted in Chapter 3.

When end-of-life health care can be delivered to a patient’s home it can be less expensive, more convenient, and just as effective as services provided in hospitals or nursing care facilities. But there is limited access to these services in rural areas, where the service may be based out of cities 50-100 miles away and have limited openings or long waiting lists to enroll. And in many instances, there are no options available for specialized medical needs, occupational or physical therapy, or mental health support.

To help fill this service gap, telemedicine (figure 10.10) seems to be increasingly feasible. Research indicates that the use of telemedicine can improve access to healthcare professionals for patients at home, and its visual features appear to allow genuine relationships with health care providers (Steindal et al. 2020). But for rural residents, limited cellular coverage and internet access can be prohibitive. Any cost savings to the patient and to the health care system may be far less than what is needed for investment in extending the needed technological infrastructure.

10.3.2.3 Hospice

Hospice programs provide an important option for end-of-life care. Hospice is specialized healthcare for those approaching end-of-life. Focuses on quality of life, comfort care, and medical, psychological, and social needs; treats the person and the symptoms of disease and illness rather than the disease itself, supports the patient and family These services are specifically intended to care for people who are terminally ill and approaching the end of their life. The focus of hospice care is not to cure disease or the medical condition. Instead, the goal is to support the patient and their loved ones while facilitating the highest quality of life possible for whatever time the patient has left. To qualify for hospice services, a physician or primary healthcare provider must verify that the patient is terminally ill with 6 months or less to live. A patient’s enrollment can be extended as many times as necessary to support a patient until the end-of-life. A patient can disenroll whenever they choose or request re-enrollment at any time.

The focus within hospice programs is on reducing pain and keeping the patient as comfortable as possible. The broad-based approach to addressing the overall well-being during end-of-life includes attention to physical, psychological, social, and spiritual needs. To address these needs, a hospice team can involve doctors, nurses, and other health care providers as needed, as well as social workers, counselors, and volunteers. Dependent upon patient preference, hospice programs may include access to options such as aromatherapy, touch and massage, art therapy, music therapy, and pet therapy. These complementary services can help with pain management, psychological well being, and contribute to the patient’s comfort and quality of life (Complementary Therapies, n.d.).

Most hospice services are provided to the patient within their own home with a family member acting as the primary caregiver. With home-based care, staff make regular visits and are on-call 24 hours a day, 7 days a week. And in some areas, respite care may be available to periodically spell the family member caretaker. If only a short break is needed, a relief caretaker may come to the home for a few hours or the day. But if longer breaks are needed, the patient may be moved to a hospice facility for care when the resources are available.

While in some areas, hospice programs may be available in some hospitals, nursing homes, and designated hospice facilities. In these situations, the patient will reside in these facilities for ongoing end-of-life care. The cost for both in-home and residential facility hospice programs are financially supported by the patient’s Medicare, Medicaid, Department of Veterans Affairs, or private insurance benefits. But most hospice services are often based on a patient’s need rather than their ability to pay. (Mayo Clinic Staff, n.d.)

Although hospice programs are increasingly available nationwide, less than 20% of hospices operate in rural areas. Rural hospice programs face many of the same barriers as the other end-of-life care options discussed above. Due to lower patient numbers, staffing shortages, high staff turnover, and long driving distances/time they operate under lower cost margins making them more financially vulnerable and limiting available services. This is further complicated by a common lack of available family member caregivers which is essential to the home-based hospice option. Adult children have often relocated to other cities or states, or other possible caregivers live long distances away making it difficult for the dying patient to be cared for by a family member and live out their life in their home.

With limited access to hospice services, many rural patients nearing end-of-life who need immediate care are left with no other option than to be admitted to rural critical access hospitals. These hospitals tend to be small facilities with limited in-patient or out-patient beds-often less than 20 beds. In these instances, swing beds that are regularly used for both acute care or skilled nursing care are temporarily shifted to patients who need end-of-life medical comfort care. Being in the same resource and staff situation as other rural medical care services, these hospitals do their best to support end-of-life patients, but they have a broader primary mission, operate under different regulations and restrictions, and are unable to provide many of the comfort care and family support services provided by hospice. (Hospice News 2021)

Figure 10.11 A hospice care team included people who provide interdependent services to care for dying people and their families. These teams care for the physical, emotional, social, and spiritual needs of the patient and the family.