The Concept Analysis of Death Preparedness
End of Life care is a series of physical, mental, and emotional processes and issues related to death and dying across the human lifespan. Even with advances in palliative and hospice care over the last fifty years, the fear of death, by both patients and healthcare providers, continues to have a profound impact on end of life care. Field and Cassel (eds.) for the Institute of Medicine’s report entitled Approaching Death: Improving Care at the End of Life that “education does not sufficiently prepare health professionals to recognize the final phases of illness, understand and manage their own emotional reactions to death and dying, construct effective strategies for care and communicate sensitively with patients” (para #, 2013). Field and Cassel (eds.) (2003) identified that a problem among healthcare providers is how to prepare for and communicate the needs and care of a dying patient in a way that is cogent and sensitive to the dying process. Healthcare providers who work to sustain life are now faced with a dilemma as they provide care that ends a patient’s life. It is the intent of this paper to present a concept analysis of death preparedness using the Walker and Avant (2011) method.
Concept of Death Preparedness
The concept of death preparedness was chosen as dying, death, and end of life care continue to be viewed as foreign areas in healthcare. End of life healthcare is one-fourth of Medicare expenses and end of life care communication is correlated to lower healthcare costs and better caregiver adjustments and acceptance (McLeod-Sordjan, 2013) The concept of death preparedness will be to explore healthcare provider’s roles within patient’s acceptance of chronic health conditions, advance directive planning, and end of life discussions.
Purpose of Concept Analysis
The purpose of this concept analysis is to define the concept of death preparedness, identify its antecedents, defining attributes and consequences, and discuss its relevance to clinical practice and end of life care. As a concept, death preparedness is “the degree to which a caregiver is ready for the death, dependent on the caregiver’s perception of his/her readiness for death” (McLeod-Sordjan, 2013, p 1011). Death preparedness has received more focus as palliative and hospice care options have increased, yet healthcare staff continue to struggle with end of life planning and care. The concept of death preparedness helps healthcare staff support their patients in end of life decisions and care. Death preparedness allows informed patients and families to experience a death with dignity.
Death itself is defined by Merriam-Webster as a permanent cessation of all vital function and as “the cause or occasion of the loss of life” (n.d.). Prepared is defined by Merriam-Webster as “subjected to a special process or treatment” (n.d.). The Oxford Dictionary defines death as “The action or fact of dying or being killed; the end of the life of a person or organism” (n.d.). The Oxford Dictionary also defines prepared as an adverb mean “created in advance; pre-planned” (n.d.).
Rando (1986) describes anticipatory grief as “encompassing the processes of mourning, coping, interaction, planning, and psychological reorganization” as a result of an impending death” (as cited by Zilberfein (1999) p. 1473). Simon (2008) defines anticipatory grief from a social work perspective as allowing a person “to prepare for and develop coping skills for life changes that will take place after the death of this important person” (p. 1280).
Breen, Aoun, O’Connor, Howting, and Halkett (2018) define preparedness for death as the caregiver’s preparation for the death of the patient and also define it as a forewarning. Breen et al. (2018) adds preparedness for death as a multifaceted conglomerate that is composed of psychosocial, medical, spiritual, and practical matters. These are the aspects that healthcare workers, patients, and families encounter as they approach end of life care.
Defining Death Preparedness
Merriam-Webster defines death as the loss of life and to be prepared means to be ready. Joining these words and their definitions together means preparing patients, families, and staff to be ready for the patient’s end of life. From a holistic approach, preparing for end of life care means preparing and providing for the patient’s medical, nursing, psychosocial, spiritual, and emotional needs. Death preparedness would be defined as providing a holistic approach and plan of care to meet a patient’s and family’s needs at the end of the patient’s life.
Defining Attributes (Walker and Avant)
Walker and Avant (2011) identify defining attributes as the qualities of the concept that describe and distinguish the concept. McLeod-Sordjan (2013) identifies the attributes of death preparedness to include facilitated communication, acceptance, awareness, transition in death attitudes, acknowledging and participating end of life care decisions, and end of life planning.
Facilitated communication is considered one of the most crucial attributes for death preparedness and end of life planning. Personal experiences with death, lack of acceptance of dying and not acknowledging feelings related to death serve as stumbling blocks for effective communication (McLeod-Sordjan, 2013, p 1013). When physicians, nurses, and support staff of social workers and chaplains provide an open communicative environment, it allows for patients and families to comprehend the diagnosis, its severity, and explore end of life care. The understanding of a diagnosis and health condition leads to its acceptance. Lokker (2012) as cited by McLeod-Sordjan (2013) writes when patients are aware they are dying, they are more likely to die with dignity.
Phrases and terms related to the concept of death preparedness include advance directive, end of life planning, dying with dignity, anticipatory grief, and preparedness for death. While searching for information related to death preparedness, these terms and their articles appeared in the search results. Death preparedness appears mainly in the context of palliative and hospice care environments. Advance directive is a more common term and a document medical and nursing institutions will keep on file should the patient be admitted and become incapacitated.
Constructed Cases for Death Preparedness
Model Case: L.C. is a 55 year old female diagnosed with intestinal cancer that has metastasized to her lungs and breasts. She has been married to her husband for over 30 years and has two children, both of whom graduated college. L.C. and her family have a strong Christian faith and professional careers. L.C.’s oncologist discovered the metastasized cancer to her lungs and breasts and gave her a life expectancy of 3 months. L.C opted to pursue palliative care and lived past the initial 3 months. She underwent several surgeries to have some of the cancer near her intestines removed in attempts to maintain her condition.
L.C. realized the severity of her diagnosis, met with her pastor, friends and family and discussed her will and final arrangements with her husband and children. L.C. lived 15 months after the diagnosis of metastasized cancer. After nearly 15 months, her conditioned worsened significantly and she transferred to the homecare agency’s hospice service. Friends and family visited with her throughout the week. She was kept comfortable and often sleeping because of the pain medication she received. She died after one of her long time friends who lived out of stated visited with her. The hospice nurse pronounced the patient at her home where she wanted to remain. L.C.’s pastor met with the family right after she died and prayed with the family before the funeral home arrived. L.C.’s husband described her death to a hospice nurse in the lyrics of Frank Sinatra’s song, I Did It My Way, saying, “L.C. did it her way.” L.C.’s family was sad but had a celebration of her life with a funeral service with over 300 people in attendance. The hospice agency provided thirteen months of bereavement support and counseling for L.C.’s family, which L.C.’s husband utilized three times.
L.C.’s case is a model one, as L.C. and her family were prepared for her death. The family had over a year to cope and grieve knowing her death was close. L.C. and her family were able to make the most out of their palliative care to achieve a good quality of life. They recognized when her condition changed with increased pain, altered mental status, and difficulty ambulating. The family knew her wish to remain home, and took comfort in supporting L.C’s wishes and in their Christian faith. The family and friends also supported each other at the time of death and after it. L.C. and her family accepted her death, were aware of it, and communicated with one another her wishes and requests.
Contrary Case: N.S. is a 84 year old female who was diagnosed with advanced lung cancer and given an expectancy of 3 months. N.S. lives independently and is supported by a 58 year old daughter who lives in town, and two married sons in their sixties with children both of whom live in state. All of the patient’s children are supportive of their mother. N.S’s husband died 4 years prior of congestive heart failure. The oldest son is the patient’s power of attorney and healthcare advocate. The patient’s daughter visits daily to make sure she is taken care of. After consulting with a local homecare and hospice agency, N.S. and her oldest son decide to place N.S on hospice care.
While going to make a visit two weeks after being admitted to hospice care, the patient’s daughter arrives to find her mother unresponsive on the couch with shallow breathing and a weak pulse. The daughter calls 911 and at her request has her mother taken to the hospital for care. N.S. is able to be stabilized and is moved to general inpatient level of hospice care at the hospital. The daughter continues to grieve and asking for more life sustaining treatment to be provided such as IV hydration and inquiries about chemotherapy. N.S.’s condition continues to decline at the hospital and she dies. The daughter shared that she could not imagine living without her mother. She knew her mother was sick but thought she could continue to care for her. The daughter was upset her brothers did not pursue other options and felt they were not present enough in their parent’s care.
This is a contrary case as the patient and family understood the patient’s diagnosis, however the patient’s daughter was unable to accept it. While the daughter was close with her brothers, she felt she was neither supported by them, nor did she feel that they were doing enough for their mother. The daughter was upset and frustrated over the lack of options and control of the situation which clouded her anticipatory grief. When her mother died, the daughter was hit with the overwhelming characteristics of the situation and had to face the reality of her mother’s mortality and death.
Antecedents and Consequences of Death Preparedness
Walker and Avant (2011) define antecedents as events which must take place in order for the concept to transpire, and further define consequences as the events or results after the occurrence of the concept.
In order for death preparedness to take place, the events of the antecedents, before death preparedness, must take place. McLeod-Sordjan (2013) describes these antecedents as where a patient questions his or her own mortality. The patient is moving towards accepting that he or she is mortal and will experience death. McLeod-Sordjan (2013) also identifies a patient’s own motivation as an antecedent for death preparation. Factors and influences on a patient’s motivation include their own fears and beliefs about death, related experiences with death and dying, religious and cultural beliefs, and trust in close family members and friends. These antecedents of awareness and acceptance of one’s mortality, awareness of a patient’s beliefs and influences, and motivation to discuss end of life care provide a framework of preparedness for a patient, family, and healthcare providers.
Being prepared for death involves accepting one’s fate and life’s end. McLeod-Sordjan (2013) writes that a patient’s acknowledgement of his or her own death is in the form of an end of life plan. An end of life plan, prepared by a patient for his or her family and healthcare team, informs them of the patient’s desires for the end of his or her life. Patients’ wishes to see friends and family, remain at home, remain without pain, and have a planned funeral are all details that can be included in the end of life care plan. The patient’s end of life care plan, in turn, allows the patient to maintain autonomy. Tan and Manca (2012) as referenced by McLeod-Sordjan (2013) describe the caregivers in the families feel less burdened by the decisions because of the support from the patient’s end of life care plan. As a result of an end of life plan, the patient’s family would be able to grieve and cope more easily knowing they followed the wishes of their loved one.
Figure 1. Antecedents, attributes, and consequences of death preparedness
Empirical Referents of Death Preparedness
Walker & Avant (2011) state that one should use empirical referents as classes and categories that depict and detail how the concept can be used, along with measurement tools to determine its effectiveness. McLeod-Sordjan (2013) reports there are no mechanisms that record death preparedness for patients with a long term illness. Klug and Sinha (1987) as cited by McLeod-Sordjan (2013) report the Klug Death Acceptance Profile and the Death Attitude Profile-Revised are used to calculate death attitudes in the bereaved over their fear of death, and avoidance and acceptance of death. The Multidimensional Orientation Toward Dying and Death Inventory (MODDIF-F) is also used to capture the patient’s avoidance and acceptance of death, however all of these profiles do not record the awareness or planning for a patient’s death. Based on these profiles, more instruments need to be developed to record awareness and acceptance of death and end of life planning.