There is no debating that death touches every individual and family, and that contemporary American society is unmistakenly a death denying culture. For confirmation of this fact think of the terms used as euphemisms for dying: “gone to meet his or her maker;” “gone on to a better place;” “made his or her transition;” “passed on;” and numerous other expressions that do not employ the word “died.” Unfortunately social workers and other mental health professionals are often no better prepared to deal with the death of a client, a loved one, or their own immanent dying, than any other individual. Yet, it is precisely during the period immediately after the diagnosis of a life threatening illness like AIDS until shortly before death that individuals and families can greatly benefit from skilled mental health interventions. This work helps all concerned express the feelings and fears that they are experiencing; balance hope with the realities of having a life threatening illness; prepare for the end of life, insure that the dying person will be in as much control of his or her life as possible during the final part of their life and to say good bye to those people who are closest.
Until the clinician has faced and worked through his or her own issues about their own mortality, it will be extremely difficult to work effectively with individuals and families who are struggling with end of life issues. For the purpose of this article the term family is not limited to biological family or a legal marriage, but also includes same sex partners, unmarried opposite sex partners, and friendship groups that function as primary support systems for the person with AIDS (PWA), who is at the end of his or her life.
If the mental health professional has not examined his or her own beliefs and feelings surrounding death, he or she will not be able to initiate discussions about this with patients. A professional’s inability to discuss a client’s impending death and the dying process directly can only create a sense of secrecy or shame in the patient who may not have anyone else with whom to discuss these feelings and all of the corresponding issues. While initially making clients uncomfortable, it is my experience that clients who are very ill are relieved to have questions about death, dying and end of life practicalities raised. One useful way to introduce the topic is by asking what the client believes happens after death, and are those beliefs comforting?
When an individual has a life threatening illness like Cancer or AIDS it is often hard for all concerned to tell when the person has made a transition from living with his or her illness to starting to die of it. It is often even harder to tell when the people around the individual should acknowledge that dying has entered the relationship (Marks, 1995). This is a time when a skilled social worker can be an invaluable asset to an individual and family in this phase of their life cycle. At a certain point, different for each individual, we must all let go of living well and begin to consider the concept of “dying well.” As Marks (1995) notes “this can be a very attractive concept for both client and counselor: many associate the dying process with all the worst things, from pain to mental deterioration. But what does it mean to die well, and how can counseling near the end of life promote this outcome? In addition how can people who are living truly understand what it means to the body and mind to let go of life?”(p.2) This article will address concrete ways that social workers can be of valuable assistance in ensuring that clients at the end of their lives have the opportunity to “die well.”
Psychotherapy with people with AIDS who are at the end stage of their illness generally occurs in one of two clinical situations. The first is where the individual has been in some form of on going counseling prior to entering the final phase of life. In the other case, a client seeks out a mental health professional as a direct result of being diagnosed as HIV positive or as a result of having deteriorated due to wasting or an opportunistic infection. AIDS has challenged social workers in private practice as well as those who are employed in hospitals, nursing homes, hospices, visiting nurse services, community based AIDS organization, and other home health care agencies to become prepared for working with people who are dying and their loved ones.
Few social workers or other mental health professionals receive specific training in counseling people who are at the end of their lives. There is an art to being of assistance to people who are dying and their significant others that is founded upon the professional having become comfortable helping people directly confront some of life’s most painful issues and decisions. Asking a client questions about why he or she is making the choice to begin or discontinue a particular treatment and what the ramifications are of those choices helps him or her to look at what he or she values about their life. Working with PWAs who are dying and their loved ones, and to engage in conversations about quality of life, spirituality, dying and death, which are all inherent in AIDS work, are invaluable clinical skills to possess which are relevant to all aspects of practice with any client population. While dying patients who are in ongoing psychotherapy will usually still want to do some intra-psychic exploration, the author’s experience is that the content of sessions usually focuses increasingly on practical issues related to the ending of their lives, unfinished business with important loved ones and feelings accompanying the knowledge that one ‘s life is ending.
The clinician’s experiences with death and dying and personal belief system about dying has the potential to shape his or her work with patients who are at the end of their life. For instance does the clinician believe that death is the end of it all, or does he or she envision some kind of life after death? When working with a client who is dying the professional needs to inquire about the patient’s spiritual beliefs as well as the potential to be comforted by traditional religious beliefs and institutions. If the clinician has a different belief system than the client, it may be difficult for the therapist to understand and empathize with just how comforting and important religion may be. Conversely, some mental health professionals may have difficulty in understanding some clients’ complete indifference to any potential comfort that can be found in spiritual or religious tenets.
Health care professionals need to do everything in their power to ensure that dying clients get what they need, one of which is aggressive control of pain and anxiety. As Follansbee (1996) states “the dignity of a peaceful death, without pain, fear or futile therapy can be realized only if time is spent in its preparation”(p.6). Most people report fearing dying alone. Thus all therapists can be of enormous assistance in helping clients make plans that insure that they will not be alone at the time of their death. The remainder of this article will elaborate on the role that any mental health professional can take to be of assistance to their clients at this time of enormous vulnerability and transition.
Rose (1996) notes that it is not always clear when someone is dying. Sometimes if a person has been in a serious and steady decline with wasting, disorientation, and a cascade of other symptoms and infections, it can be hard for the closest care givers to see, or admit, what is going on. Rose goes on to say: “If this is the case, it can make a tremendous difference for physicians, friends or mental health professionals to speak the truth, acknowledging the approach of death gently but clearly”(p. 1).
Categories of Dying
Follansbee (1996) describes four categories of dying, two of which are primarily psychological and two of which are primarily physical. For social workers to intervene effectively with people living with or dying from HIV or AIDS an understanding of these categories is very helpful, especially in order to help a client conceptualize where he or she is on the continuum of the process of dying. Follansbee states that in response to any initial diagnosis of a potentially terminal illness, an individual may begin the psychic process of accepting death. Sociologic dying, the second category, involves the withdrawal from people and activities. Biological dying involves the loss of those characteristics that constitute being “human,” for example, personality. Finally, physiologic dying represents the failure of the body’s organs, the state that most of us recognize as death. Follansbee explains “the terminal phase of dying involves all four of these processes, although the psychological aspects may begin months or years before the physical processes noticeably progress”(p.5).
Follansbee continues: “everyone experiences all these categories, although people differ in their attention to any one of them”(p.5). Many people will not focus on psychic or sociologic aspects until they face the biologic and physiologic stages of dying; others will never be able to distinguish the psychic from the physical aspects. He goes on to caution “confusion may arise when patients and providers use the term dying to describe different categories: the patient focuses on the psychic or social aspects of the process while the provider may focus on the biological or physiological aspects”(p.5). For people with any life threatening illness, dying often begins when he or she is diagnosed. Yet physicians and other health care providers may not recognize the dying process for several years. “This discrepancy may lead to misunderstanding or conflict. By introducing the above mentioned categories of dying, social workers can help patients recognize the difference between living with a terminal disease and dying from it” (Follansbee, 1996, p.5).
Preparing For Serious Illness
As people develop symptoms of advanced AIDS they increasingly lose control over their bodies and lives. One task of counseling is to help people living with HIV and AIDS recognize what they can control. An individual’s physical and mental deterioration has an impact on his/herself as well as the people he or she lives with. Family therapy can be a valuable tool to help all members of the family adjust to the changes that the progression of a loved one’s illness has on the family structure and dynamics. Clients living with a progressive disease like HIV/AIDS require help in planning for hospitalizations and debilitating illnesses. It is best for the clinician to raise the difficult and painful issues discussed below long before there is any apparent need for them. The rationale for this is that when the client is still well he or she is more likely to have the necessary physical and psychic energy to plan for the ensuing difficult realities. Social workers need to question and often challenge clients’ unwillingness to discuss concrete plans or desires for a living will or treatment options. It is helpful to stress to the clients that by addressing these issues now they can insure that they will have a measure of control over what happens to them later. Obviously this has the potential to confront a client’s denial, and thus the clinician must be prepared to be the target of the client’s anger in response to initiating such necessary queries.
It is essential that professionals overcome their own discomfort about discussing preparing for the end of life in order to help clients, their families and loved ones prepare for this eventuality. It is useful to raise with all clients, but especially those with a life threatening illness like AIDS, the issues of having prepared a will, medical proxy and living will. Therapists can introduce these issues by stating that while it is clearly much too early to begin to think about some of the hard and difficult realities that accompany having a serious illness, he or she feels that it is in the best interest of the client that difficult issues begin to be addressed now. This is certainly true if the client is a single parent and hasn’t made any provisions for who will care for their children. If they become too ill to actively parent, who will have custody of the children following his or her death?
Crucial Points to Specifically Discuss With Clients
- Which hospital does he or she want to be taken to in the event of an emergency. Who in their support system is aware of this?
- If the client lives alone or with small children, who have they discussed contacting, even in the middle of the night, to help them get to the hospital and/or to care for children or pets during a crisis?
- Clients need to maintain a current and complete list of all prescribed medications and dosages that should be brought to the hospital during an emergency admission.
- Clients need to discuss advance medical directives that include how aggressively they wish to be kept alive if there is not any reasonable hope for recovery or for a good quality of life.
- A living will needs to be made out. These directives need to be written down and given to the physician and brought to the hospital to be placed in the chart at the start of each hospitalization.
- Clients need to designate a health care proxy (a family member or close friend) and ask this person if they feel that they will be able to insure that the client’s wishes will be followed even if those wishes are contrary to what the proxy feels is best.
- Clients need to be asked “What do you want done in the eventuality that your heart stops beating?” If a client does not wish to be resuscitated then a “do not resuscitate” (DNR) order needs to be written and placed in his or her chart. Clients need to be reminded that they can always revise these instructions if any of their feelings change over the course of their illness.
End of Life Issues
“Few people who are not profoundly depressed speak about being ready to die or welcoming it, except if they are in the advanced stage of a terminal illness. People with AIDS who have become debilitated after going through extensive treatments often speak of being ready to die since they no longer have a meaningful quality of life”(Rabkin et al, 1994, p.147). It is imperative for the therapist not to judge these feelings and to elicit how the client feels about approaching the end of his or her life.
Funerals and Memorial Services
Dying clients can be greatly empowered by urging them to discuss what they wish done with their bodies after they have died? Do they want to be cremated or buried? Have they written this down? It can be comforting for some people to plan their funeral or memorial service, specify who they wish to speak, what music or prayers should be recited, and where the service should take place. Similarly, confronting these details may be too stressful for some individuals who can’t face what making those plans means in terms of accepting their health status. But if the client has been able to discuss these issues during a professional session, the next step is to urge him or her to talk over these details with family and loved ones, and to write them down. If the family or loved ones refuses to discuss these issues with the client then it would be useful for the worker to urge the significant others to come in for some sessions to help them work through their feelings of denial, sadness and discomfort.
These family sessions can help members see that once they are clear about the wishes of their loved one, it will make it that much easier for them to carry out his or her wishes after he or she has died. It is a useful intervention to restructure the reality from one of morbid preoccupation with the unpleasant inevitability, to allowing the person who is ill to take control over the few areas of his or her life that are still open for them to have control over. It is also useful to explain to the loved ones that it is an expression of how much the ill person loves them that he or she doesn’t want them to have to guess as to what should be done during the extremely stressful period following their death.
It is especially important to have several sessions with the terminally ill individual and the person he or she has designated to act as their medical proxy. Assigning a medical proxy is one way the person who is dying is still able to take care of his or her loved ones while insuring that his or her wishes will be carried out if they are unconscious or unable to speak or make decisions on their own behalf. There is enormous stress inherent in having the responsibility to make life and death decisions for another individual. In order to address the reality that not everyone who is very close to a dying person will feel able to act as the medical proxy, it is urgent that the specifics of what the dying individual wants in terms of life support and end of life care issues be explicitly and in the minutest detail discussed with the person who is designated to legally be responsible for making these decisions once the patient is no longer able to. The worker needs to ask the medical proxy whether he or she feels able to carry out wishes to discontinue treatments or life support, even if this decision is contrary to their own personal wishes and feelings. The proxy needs to be encouraged to voice all doubts, fears and concerns, and if necessary, clearly state they do not feel they could authorize the medical team to “pull the plug.” If the proxy feels unsure of his or her ability to have treatments or life support terminated and this is the expressed wish of the ill person, then the proxy should be encouraged to withdraw from this important position. The proxy who is honest about not feeling able to comply with the ill person’s wishes and does not wish to be a proxy should be supported for helping insure that the sick person can then proceed to locate an individual who will be willing and confident in their ability to shoulder these responsibilities. Once a proxy has expressed his or her willingness to function in this role, then a few more joint sessions are helpful for the patient to explicitly tell the proxy what he or she wishes done, the proxy repeats the decisions, and the instructions are written down so there is no ambiguity about these crucial decisions. It is also useful for these two people to share their feelings about the need for a medical proxy and what about their relationship has allowed it to include this level of intimacy and trust. Pain Management
As Rabkin et al (1994) state, “Most people fear that they will be in excruciating pain as they near death from a terminal illness. Clients need to be assured that they will not suffer. Most major hospitals have physicians who are pain management specialists who can consult with the patient about helping him or her remain comfortable at this phase of the illness. Some people prefer to be unconscious, others wish to be alert, but sedated and pain free”(p.73). People need to be taught how to explicitly describe how much pain they are experiencing in order to effectively communicate this to the physician. Pain can be effectively controlled even if the client decides to die at home. In addition, therapists can help clients who experience pain by teaching them the techniques of self-hypnosis and visualization.
Weiss (1995) states that:
“actively chemically dependent patients with AIDS usually require generous amounts of medication while in the hospital. Medical and nursing staff often withhold the very medication these patients need, making them even more irritable and difficult to manage. Making patients comfortable with adequate opiates or sedatives helps them feel they are being heard, enhances their trust, and improves the working relationship between the chemically dependent patient and staff members”(p.46).
All therapists need to be alert to the above mentioned dynamic and be prepared to advocate for chemically dependent patients who are not being adequately medicated. Conversely some patients who are in recovery have unrealistic expectations regarding using any drug that they once may have taken illicitly. Social workers and nurses need to remind people that they did not get sober to suffer, and that taking prescribed medication to alleviate pain is not the same as abusing drugs.
Choices in Dying
One major issue for dying people is that they are at a point where their ability to control what happens to them has been greatly diminished. Clients at the end of their lives can be greatly empowered by social workers engaging them in a discussion about where they want to die. Many clients may not realize that whether to die at home, in the hospital or in a hospice is a decision that they and their loved ones can and should consciously make together in consultation with the physician. It can be enormously helpful if the therapist raises the issue of, and explains the concept of hospice care. Suggesting that an intake worker from hospice visits the client and his or her family to describe the program in detail is one useful intervention. These discussions are best held in at least two different sessions. The first is with the client alone to explore all of his or her feelings about this emotionally laden issue. Next the discussion needs to be continued with the people who are part of the client’s support team, if there are any, in order to explore all the emotional as well as logistical and practical considerations.
It can often be difficult for all concerned to acknowledge that “enough is enough.” It is an essential and completely appropriate role of the counselor to encourage the client to explore his or her feelings about whether or not to cease treatments or to continue fighting for extra time. It is not the worker’s role to give permission for one choice or another. Dying can be a quality time both for the terminally ill person as well as those who love him or her. One way to help insure this, is for the worker to ask the client questions that will offer him or her options and some control over the process. Rabkin et al (1994) correctly note that it is far easier to believe in the right to choose the timing of one’s death when the person is actively dying and when their remaining time is likely to be hours or days. The strength of this conviction is tested when the person is not acutely and severely ill, but untreatable, and may have weeks or months to go before an inevitable death. Such a person may be able to survive physically but with such chronic discomfort and restricted horizons he or she sees no reason to remain alive. Is this person entitled to say “enough is enough?” Many health care providers who work with terminally ill people believe so. Once the client has decided to discontinue medical procedures or drugs, often I.V. morphine is started with the double purpose of alleviating pain and possibly, accelerating the timing of impending death.
People with AIDS and their providers have been on the vanguard of the assisted suicide debate. Many people with AIDS discuss wanting to have the means to end their life or discontinuing treatments if they feel that their life has become intolerable. It is an important role of psychotherapy to encourage patients to discuss these feelings and to help the patient evaluate whether or not he or she is depressed. Conversations with terminally ill people that focus on when they might wish to either stop treatment or actively end their own lives are never one time discussions, but need to occur through out the progression of the disease. For patients who are depressed, when depression is treated, most regain the psychic energy required to continue fighting for their lives. Most patients view going blind, becoming incontinent, becoming demented, or being in unbearable pain as defining an intolerable quality of life. Not all terminally ill individuals who wish to die are depressed. When symptoms of illness and pain are treated and controlled, hope is restored and life once again becomes valued. As peoples’ illness progresses, it is striking to note that many terminally ill individuals are currently living lives that others, and they themselves once considered intolerable. I believe that the question for therapists working with dying clients who discuss wanting help ending their lives isn’t whether we think suicide is OK, but rather have we done everything in our power to make certain each of our clients knows that his or her life is precious while they are still alive, and that the ability to make a rational choice to seek assistance in ending one’s own life can be one understandable option. (Michael Holtby’s two chapters in this volume provide in depth discussions of the issues inherent in “self deliverance” and how to differentiate this from suicidality.)
Crucial Questions for Counselors to Ask A Dying Client:
- Do you feel that you are going to die soon? If so, how do you feel about this?
- How will you know you no longer wish to continue medicines, treatments or supplemental feedings? (It’s important to reflect to the client that what he or she feels is intolerable may in fact change. Most people with AIDS surveyed felt that blindness, dementia and incontinence were hall mark’s of life not being worth continuing.)
- Do you prefer to die at home, in a hospice or hospital?
- Whom do you wish to be with you?
- Would you like to have a clergy person make a final visit?
- Is there anything you haven’t said to your loved ones?
- Is there anything else you need to do or complete?
- Have you thought about letting go since it seems to me that you’re suffering a great deal?
Once I.V. morphine has been started, a person may become unable to communicate. Therefore, prior to the beginning of a morphine drip the professional should look for opportunities to facilitate conversations between the dying person and his or her loved ones and family members. It can be both enormously helpful and comforting to the significant others of a person who is dying to hear a professional ask them the following questions.
- Is there something you haven’t said to your loved one?
- Are there specific things you need to say to him or her?
- Have you told the person that’s it’s okay for him or her to go now?
- Tell them what specific things or events will always make you think of them.
- Remind him or her of a special moment you two shared that will be with you forever.
- Tell him or her that you love them, and thank them for the relationship you had.
- Say “good bye” and how much you’ll miss them.
- Assure them that though you will miss him or her terribly that you will eventually be alright.
While working with individuals who are dying can at times be draining or stressful, it also has the potential to be invigorating and bring countless personal as well as professional rewards, not the least of which is demystifying death and dying. As Gaies and Knox (1991) point out, “By confronting with dying clients the fragility of life and the value of each day, health care professionals begin to confront the vulnerability of their own lives and to acquire a deeper appreciation of living”(p.1).
Follansbee, S. (1996). The dying process. FOCUS: A guide to AIDS research and counseling. V.11, No.2.
Gaies, J. & Knox, M. (1991). The therapist and the dying client. FOCUS: A Guide to AIDS Research and Counseling, V.6, No.6.
Marks, R. (1995). Editorial: Dying well. FOCUS: A guide to AIDS research and counseling. V.10, No.8.
Rabkin, J., Remien, R. & Wilson, C. (Eds). (1994) Good doctors, good patients: Partners in HIV treatment. New York: NCN Publishers.
Rose, A. (1996). HIV and dying: The challenges of caring. FOCUS: A guide to AIDS research and counseling. V.11, No.2.
Weiss, C. (1991). Working with Counseling chemically dependent people with HIV illness Chemically dependent HIV-infected patients on an inpatient medical unit. In (M. Shernoff, ed), New York: Haworth Press, pp.45-53.
Category: AIDS/HIV Articles