End-of-life care and practice has evolved over the years. There has been a shift on the attitudes about death in American society. Age, gender, race, and socioeconomic status all contribute to the attitudes toward death. It impacts everyone individually and it is not a universal grief. Many Americans are uncomfortable in speaking about death. Young older adults have a higher anxiety in death compared to older adults. Older adults are not strangers to death and grief and are more accepting of death. What does trigger their anxiety is the thought of their death process. Many older adults have the fear of being institutionalized, pain and suffering, not having closure, and the unknown. Older adults want to be able to make their own decisions with dignity and be respected on their wishes. There have been controversies in end of life care with pain management, the right to die, and with aid in dying. Advance directives are very important for the autonomy of older adults. Many policies have been enacted to help older adults such as the Dying Person’s Bill of Rights, Death and Dignity Laws, the 1990 Patient Self-Determination Act, and the Uniform Health Care Decision Act. Losing a loved one is very traumatic especially losing a spouse. Physical and mental health is declined at times.
The changing context of dying and the attitudes toward death have evolved over time. In preindustrial societies, dying at home was very common. It was normal for the community to be involved with rituals and ceremonies. Now, Americans are very uncomfortable in discussing death. They tend to use vocabulary such as sleep, pass away, and rest and not use the word death as a way of avoidance (Hooyman & Kiyak, 2018). Variations in attitudes toward death may depend on age and gender. The oldest old tend to be more accepting about their own death than younger adults and middle age adults. Younger adults tend to have a higher fear of death anxiety than older adults. This can be for many reasons. One particular view is that younger adults have more to lose and that older adults have already experienced life. Another reason is that older adults have already experienced someone’s death whether it was a family member or friend. Older adults are not strangers to death and grief (Thorson, 2000).
With this being said, what does bring anxiety to older adults is the process of their death. They know death is inevitable. But what they do have a concern in is pain and suffering, autonomy, being institutionalized, and the unknown. For women in particular, death anxiety increases in their 50s. They often report anxiety and fear of dying as they get older (Hooyman & Kiyak, 2018). As for men, they have a higher anxiety towards the unknown. This may be because women tend to be more open with their emotions and are connected more towards religion and spirituality.
As mentioned earlier, older adults are not worried necessarily about death, instead they are worried about the death process. It is important for older adults to be respected and given dignity. They want to be able to be heard and want adequate information in order to better make their own decisions about their death. Older adults want to have a “good death”. But what is considered a good death? For older adults, a good death is knowing the unknown of what is to come, it is to be able to maintain their dignity throughout the process, to have control over the decision making, to have pain management and comfort, to be respected of their wishes and religious customs, and to have enough time to say their goodbyes (Hooyman & Kiyak, 2018).
One of the most important factors is pain management. Even with the technology and medical advancements that are in America today, there is still not an adequate pain management for older adults. Older adults have the most pain in the last days of their lives. In all types of chronic illnesses, pain was the most frequent in the last seven days before death according to Bailey et al. (2012). Other studies have shown that pain increased over their last year of life and by the final month it was 66% felt often or all of the time (Thorson, 2000). This comes to a great concern since older adult’s fear pain the most and want to be able to die comfortably without pain. The Supreme Court has cited two legal methods for a more aggressive pain management for older adults. The first method is a morphine drip that will abolish pain. If this is not effective, the second method is a terminal sedation that will be provided (Hooyman & Kiyak, 2018).
Another concern is where the death will happen. As for today, it is more common for older adults to “want to die at home, without pain, and surrounded by their friends and family' (Hooyman & Kiyak, 2018 p. 477). Unfortunately, this is not always the case. Sometimes older adults’ opinions are not taken into consideration and will die at a hospital or nursing home.
There are two types of care for end-of-life: palliative care and hospice care. Palliative care focuses on the relief of pain and suffering of older adults by “addressing the patient’s emotional, social, and spiritual needs' (Hooyman & Kiyak, 2018 p.486). The goal of palliative care is to improve quality of life for both the older adult and their family members (Hallowell, 2014). Hospice care provides compassionate comfort care through physical, medical, emotional, and spiritual care for the older adult and their family members in the comfort of their home or place they choose (Hooyman & Kiyak, 2018). Hospice also focuses on the quality of life of the older adults. The service is 24 hours a day and 7 days a week. It is more frequent for families that have informal support to be in hospice care. There are differences and similarities between palliative care and hospice care. Palliative care is provided in any stage of a disease while hospice care is only provided after six months or less prognosis. Palliative care provides curative treatment while hospice care excludes curative treatment. Both reduce stress for the dying adult and their family members while they physical and psychosocial relief to the older adult (Vitas Heatlthcare).
Kubler-Ross had five stages of grief for understanding the dying process. She mentioned that the dying person had to go through each step-in order to move to the next one. These five stages are shock and denial, anger/resentment/guilt, bargaining, depression and withdrawal from others, and adjustment or acceptance. But the dying process is not linear as she mentioned. As Baier and Buechsel suggests, the stages are more as “pinball bumpers” and that one’s grief may bounce in an “unpredictable pattern”. These states are anger, bargaining, denial, depression, shock, and acceptance. The balls in the pinball bumper are labeled as grief and “acceptance is the small opening where the balls fall” (Hooyman & Kiyak, 2018 p. 480).
The loss of a loved one is already very hard, so what happens when one wishes to refuse medical service. An informed consent is when a patient decides to accept or refuse medical treatment based on the benefits and harm (Hooyman & Kiyak, 2018). An informed consent helps an older adult express their own wishes. Euthanasia is referred to a painless or peaceful death. It can be passive or active. Active euthanasia, also known as causing death, is when a lethal injection is administered voluntarily or involuntarily. This is not legal in any states. Aid in dying is another term used when it is a physician-assisted death. A physician will provide a medication by which an older may or may not take it to end their life. According to Hooyman and Kiyak (2018) California, Oregon, Washington, and Vermont all have Death with Dignity Laws that have authorized aid in dying.
Advance directives are very important in end of life care. Advance directives, also known as a living will, is a written statement that shows the older adult to have made medical decisions or appoints someone to make a decision for them. Thankfully, all of 50 states have approved laws for the use of advanced directives. One law that was passed to help is the 1990 Patient Self-Determination Act which requires “Medicaid-participating hospitals, nursing homes, home health agencies, hospices, and health maintenance organizations to provide information to patients on their rights to make advance directives” (Thorson, 2000 p. 295). Unfortunately, the majority of the American population still does not have a written document for such preferences.
The loss of a loved one can be very traumatic. It affects their whole world around them Bereavement, grief, and mourning are used in conjunction with each other, but all have different meanings. Grief is the reaction to the loss. Bereavement is when grief is experienced, and mourning occurs (The Fisher Center for Alzheimer’s Research Foundation, 2019). Mourning is the process in which the survivor adapts to the loss. As social workers, it is important to be respectful or the cultures and traditions one may mourn the death of a loved one. Grief is a like a roller coaster and is not linear. There are many emotions brought up and it is normal for someone not to know how to deal with them. In order to prepare someone to grieve, a social worker may prepare the family members with interventions.