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Death and dying: Implications for inpatient, psychiatric care
Published online by Cambridge University Press: 03 March 2006
Abstract
Under a traditional medical model, discussion of issues related to death and dying are usually avoided with clients who hold a psychiatric diagnosis. Too often the result is that individuals in inpatient, psychiatric facilities are left to face grief without emotional or spiritual support. With its focus on the individual, family, and community involvement, and fostering independence, the psychosocial model affords an opportunity to change how mental health professionals address the topic of death. In this article the authors give practical suggestions for working with clients who are dying or who have experienced the death of a loved one. Two case studies are used to illustrate how these ideas can be translated into action.
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- CASE REPORT
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- © 2005 Cambridge University Press
INTRODUCTION
A review of the demography of death shows a significant upward progression in life expectancy in the United States since the year 1900. The pace continues to accelerate with the passage of time, and the span between the onset of a life-threatening or terminal disease and death has increased. At the same time the locus of dying has also been altered. Data show that approximately 75% of our dying is now done in facilities such as hospitals and nursing homes. This compares to a statistic of less than 50% in 1949 (Feifel, 1963).
Despite the increase in life expectancy in the general population and advances in medical technology, there has been a threefold increase in mortality rates among those with a psychiatric diagnosis (Currier, 2000). This increase, in part, is most likely due to higher rates of homelessness, suicide, and chemical addictions. In addition, there is a high rate of comorbidity between chemical abuse and HIV/AIDS. Limited community resources, special medical needs, and the stigma that is still attached to HIV/AIDS often make it difficult to discharge this population back into the community. Mental health workers should prepare to serve an increasing number of clients within psychiatric settings who are also facing issues related to death and dying (Allen & Sawyer, 1983).
Though death is a growing reality with which physicians, nurses, and other mental health workers are faced, many are unprepared to support clients who are dying or grieving the death of someone they love. Historically, the medical model has emphasized the extension of life, rather than how to care for the client once death is inevitable. Any discussion of death, especially if it is the client's impending death, is commonly avoided. “Emotional” issues such as death and bereavement are considered likely to upset clients, and thus, are eschewed even though there is no empirical research to support this widely held practice. Too often the client in a psychiatric hospital is left to die or grieve emotionally and spiritually alone. Unlike the philosophies of palliative care and hospice, a traditional medical model rarely allows the clients to say goodbye or to talk about their fears, hopes, or feelings (Feifel, 1963). Staff need to be prepared to work with clients who are grieving or catastrophically ill. It is well documented (Garfield et al., 1982) that training staff is of paramount importance in effective treatment. Such issues as the stages of death and dying (Kubler-Ross, 1969), do not resuscitate orders (DNRs), and living wills are part of a complete training package for staff.
We offer the following suggestions for those who need to address issues of death and dying with their clients. The recommendations are a result of our experience working in psychiatric facilities and hospice.
GRIEVING
It is best not to assume that clients in psychiatric hospitals and facilities are not grieving simply because their affect or behavior has not changed. A client with whom one of us had worked responded upon being informed of a sibling's death by saying, “Is there a bingo game tonight?” A response of this nature is not necessarily an indication of callousness or selfishness. It may take some clients weeks or even months before the impact of death is realized.
The more disorganized and chronic the client's illness, the greater the need to attempt to discuss the event with them on several occasions. There are individuals, in psychiatric facilities and within the general population, who do not want to talk about death; this, in our experience, is the exception rather than the rule. The important thing is to give each individual the opportunity. If clients, for example, choose not to talk about death, this is honored and they should be told that if they change their mind to let staff know. Sometimes clients are not given this opportunity under the guise of protecting them. In fact, we tend to avoid the topic to protect ourselves from intense emotion. Allen and Sawyer (1983) stress that a primary goal of working with bereaved clients is to give them permission to talk and grieve, and to assist them in maintaining close relationships with others to decrease a sense of isolation.
It is important to remember that many individuals who have lost a pet or women who experience a miscarriage are rarely given the opportunity to grieve. In fact, our society tends to minimize grief secondary to losses of this nature, underestimating the pain they can cause.
REACTIONS
Behavioral changes, acting out, regression as evidenced by baby talk, enuresis, or thumb sucking may occur with some clients. Responses can be more subtle, too, such as when an individual loses interest in hobbies or activities in which they were previously engaged. A preoccupation with death, disrupted eating and sleeping patterns, or increased anger are other examples, all of which can exacerbate symptoms of mental illness. These usually disappear with support and reinforcing the absence of the behavior. Family and staff sometimes fear that the client may “go to pieces” following bad news. What is perceived as “going to pieces” is often a healthy and necessary aspect of grieving. What better place for a client to grieve than in a safe environment with nursing staff trained in mental health issues? For some, structure, routine, and consistency will yield a greater feeling of security and a sense of being in control during the process of bereavement. This is often an appropriate time to increase interactions with the client and to give them additional opportunities to talk. Though they may not feel like eating, resting, or exercising, it may be beneficial to gently encourage them to do so.
The client who is dying or the client who grieves the loss of a loved one may each go through Kubler-Ross' stages. Even a loss such as an unwanted divorce or a broken heart can result in shock, denial, anger, bargaining, and resolution. Keep in mind that not all people go through these stages and those who do, do not necessarily do so in an orderly sequence. Some people die in denial and it is not always compassionate or necessary to challenge this denial.
GUILT
Remember that grieving clients may experience guilt or a feeling of responsibility for the death of a family member. On more than one occasion we have heard statements such as, “My father died because I am in here. I often made his life difficult. It is my fault because I caused him so much stress.” Clients will need a nonjudgmental ear to process these feelings. It is best that we do not jump to “fix” or remove the feelings of guilt, but listen empathetically. Grief is not an event, but a process.
COMPLICATED GRIEF
Grieving is highly idiosyncratic. As in the general population, clients vary enormously in their response to bereavement. Some suffer acutely, some take it in their stride, others become more mature and insightful than prior to bereavement. One needs to be cautious when labeling grief as pathological. Rynearson (1990) posits that the diversity of grief responses has stymied a precise diagnostic classification of pathological grief. A psychosocial approach does not require a grieving client, or a grieving staff member for that matter, to follow set patterns or rules, or to “resolve” grief in a few days and get on with life. Mourning does not follow a sequence of discrete stages. For many clients death will complicate affective and anxiety disorders. Almost half of all clients who are grieving may meet diagnostic criteria for a depressive disorder during the first year following the death. Simply allowing an individual to grieve may decrease the risk of pathological, or complicated, grief. It is beneficial for professionals to know that there are many factors that are associated with an increased risk of complicated grief. Low self-esteem, depression, a history of substance abuse, a limited support system, a recent previous loss, and the bereaved being remote from the dying individual are a few of the risk factors of which to be aware.
AVOID EUPHEMISMS
Never use euphemisms—use the word death. It is not advised to equate death with sleep. Such well-meaning but unhelpful analogies have resulted in more than one client developing a sleeping disorder. For clients who themselves have been diagnosed with a life-threatening illness, one should be honest and direct without removing hope. Feifel (1963) found that over 90% of individuals with terminal illnesses wanted to know the truth about their condition and did not want information withheld from them. It is our opinion that lying to clients about a terminal illness robs them of the opportunity to say goodbye and to address unfinished business.
REFERRALS
If a client specifically requests to talk with a rabbi, minister, or priest, this referral should be made. Mental health workers need to be very sensitive not to force their own religious beliefs or ideas about death and afterlife onto the client. Other referrals that might be in order for some clients include peer support, support groups dealing with loss, readings, and/or internet resources.
SUPPORT
Though not appropriate or feasible in all situations, encouraging clients to attend funerals can often help with grieving and allow them to be a part of the family and community. Taking clients to the funeral parlor prior to the service is often helpful in decreasing anxiety about what to expect and gives them the opportunity to ask questions. It is clear that staff, too, need support at times of crisis. At our place of employment, a crisis debriefing team was established. It is composed of trained nurses, psychologists, and social workers who are available to sit with staff following a death or serious incident. Though a model for a psychosocial approach to death and dying would be different for each program, we believe that a crisis debriefing team for clients and staff is imperative.
COUNSELING
We suggest, when possible, offering clients individual or group bereavement counseling. Both have their advantages. A primary advantage of a group is that a client's grief is shared and may decrease feelings of isolation. Some of the issues that repeatedly surface in a group dealing with grief include the impact of loss on mental health, thoughts of ending one's life, a shift in one's support system, and guilt related to unfinished business.
Birkholz et al. (2004) remind us that psychiatric nurses should perform an assessment and differential diagnosis in relation to clients' thoughts about dying and specific suicidal ideation. There may be a big difference between the individual who states, “I have nothing to live for” and another who says, “I am going to kill myself.”
SAMPLE CASE STUDIES
Following are two brief examples of how we helped clients and staff cope with death and dying on an inpatient, psychosocial rehabilitation unit for adults with chronic and persistent mental illness.
Case 1
Ms. A is a client in her early forties who is diagnosed with paranoid schizophrenia. She has been continuously hospitalized since she was in her teens. A review of her records indicates very little change in behavior during her years of hospitalization. She has been tried on all possible combinations of psychotropic medications and received extensive ECT when she was in her twenties. Though it is clear that Ms. A becomes increasingly agitated and aggressive when she is not medicated, it has never been effective in decreasing her paranoia or auditory hallucinations. Currently, Ms. A is only partially oriented and has a poor memory. Neuropsychological testing indicates that she is functioning within the deficient range of cognitive abilities, most likely as a result of years of medication and hospitalization. She is labile, easily excited, verbally threatening, impulsive, and has no insight into her illness. Ms. A is able to express some needs, enjoys grooming (make-up and hair products), and has several siblings who are supportive of her.
Ms. A kept a photograph of her mother on the dresser in her room and received cards from her on special occasions such as her birthday. It had been several years since Ms. A's mother had visited, because she was elderly and lived in a different state. The client's mother was diagnosed with cancer and became increasingly incapacitated. As soon as Ms. A's brother informed the treatment team that his mother's condition was terminal, the psychologist, along with a nurse who had a good rapport with the client, received permission to give this news to Ms. A to prepare her as much as possible for her mother's death.
During the next few months the staff maintained close contact with the client's siblings. They sat with Ms. A and her brother during a visit to the hospital. Ms. A had the opportunity to also hear about her mother's condition from a family member. She was given the opportunity to process this as best she could, and the nurse and psychologist were gentle and compassionate, but honest and direct about the prognosis.
When the client's mother died, the team gave the family the option of having the staff give the news to Ms. A or for them to come to the hospital and share the news with her. The family believed it was best to do it themselves and that the ideal situation would be to sit face-to-face with their sister and to have staff present. The family did not want Ms. A at the funeral and this decision was supported by the team. Ms. A was too unpredictable and disorganized to take off grounds to a funeral being held in a different state; however, it was the family's idea to make a video of the funeral. When they came to meet with Ms. A they informed her of her mother's death, and the family and client watched the video together. This allowed her to be part of the funeral and to grieve. Staff met daily with Ms. A after the family visit to see how she was adjusting. On some days she would say, “I don't think it was my mother who died.” Although for some clients statements such as this may be an indication of denial, for Ms. A it was most likely the result of cognitive distortion. It was clear that the death was understood at some level because she would occasionally talk rationally, if only for a brief period of time, about the death.
Case 2
Mr. B was a male in his late thirties, diagnosed with a bipolar disorder. Mr. B was well educated, bright, articulate, and worked for years as an artist. He had several previous admissions in psychiatric hospitals for depression. He responded well to medication and therapy and his hospital stays were usually short lived. About a decade prior to his death, Mr. B was diagnosed as HIV+. At the time of his last admission, he was depressed and had moved into the final stages of AIDS. Also, he had signs and symptoms of AIDS dementia complex. Though his memory was impaired, Mr. B never wandered off hospital grounds and initially, was healthy enough to move independently around hospital grounds. He had an older sister who was very active in his treatment and was an advocate for her brother.
The treatment team worked closely with Mr. B and his sister in developing a DNR order. The psychologist and a representative from nursing spent time with the client and his sister at their request, in planning Mr. B's funeral. The client and his family did not want any “heroic” measures taken to maintain his life and they wanted him to die in the psychiatric hospital. They understood that if he was transferred to the infection disease unit at an area medical hospital that his life might be extended a few more days. However, they were much more interested in quality of life and that Mr. B had familiar faces around him when he died. When Mr. B became critical he remained on the unit as long as possible. He had to be transferred to the medical unit of the hospital about 24 hours before his death. There was a staff member whom he knew with him at all times and many others visited. He lapsed briefly into a coma and died. His death was announced on the unit so that the other clients who had lived with Mr. B were aware of his death and given the opportunity to talk about him and their feelings. Because many staff had become close to Mr. B, the nurse supervisor and the psychologists were available on all shifts to afford them time to process the death. Nursing staff from other units also offered coverage during the funeral so that staff could attend. There was a tree planting ceremony for both staff and clients about a month following Mr. B's death. At the ceremony his family praised staff for helping their brother die with some level of control and dignity.
CONCLUSIONS
Many authors (Kubler-Ross, 1969, 1975; Feifel, 1963) have demonstrated that dying and grieving are made easier when clients are permitted to talk about their feelings. Opening channels of communication tends to mitigate feelings of inadequacy, guilt, and depression. Also well documented (Garfield et al., 1982) is how important it is to offer training to staff so that they are better prepared to guide clients as they journey through the realm of death and dying. With more hospitals incorporating palliative care, the opportunity to change how we define and work through grief in a hospital-based program has come. With its focus on the individual clients and their strengths, the psychosocial model of psychiatric rehabilitation affords greater flexibility in treating grief. Hospice and palliative care fit nicely into this model. Clients can be given greater control and allowed to participate in the decision-making process about such issues as living wills and DNRs with the support of a nurse and a multidisciplinary team. The vast amount of research that has been collected on the topic of death and dying in the last 25 years can easily be incorporated into the psychosocial model of care, helping to challenge taboos and myths about this topic and its effect on clients in psychiatric settings.
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