Few mental health or health care 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 loved ones 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 people who have life threatening illnesses or who are dying and their loved ones, and to engage in conversations about spirituality, dying and death, which are all inherent in AIDS work, are invaluable clinical skills to possess that are relevant to all aspects of practice with any client population.
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. Clients living with HIV require help in planning for hospitalizations and debilitating illnesses. It is best to raise the difficult and painful issues discussed below long before there is any apparent need for them. When the client is well he or she is more likely to have the necessary energy to plan for these difficult realities. The counselor needs to question clients' unwillingness to discuss concrete plans or desires for a living will or treatment options. 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.
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, the issues of having prepared a will, medical proxy and living will. Counselors 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, the counselor feels that it is in the best interests 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 and 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 do 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) It is imperative for the counselor not to judge these feelings and to elicit how the client feels about approaching the end of his or her life. While initially making clients uncomfortable, it is my experience that clients 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?
Funerals and Memorial Services
Dying clients can be 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 counseling, the next step is to urge him or her to talk over these details with family and loved ones. 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 passed away. 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 one way the person who is dying is still able to take care of his or her loved ones.
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." 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, nurses ands 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."
Counselors and social workers 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. Nurses, counselors and hospital social workers 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 counselors 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 counselor, nurse or hospital social worker raises the issue of, and explains the concept of hospice care. Suggesting that an intake worker from hospice visits the client 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 and 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 that 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. After its initiation, there may be a period of alertness for several days, or even weeks, before death occurs. But once a morphine drip has begun, a clinet usually becomes unable to communicate.
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 begun, a person may become unable to communicate. Therefore, prior to the beginning of a morphine drip the counselor or nurse 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 demystifing 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."
Gaies, J. & Knox, M. (1991). The therapist and the dying client. In FOCUS: A Guide to AIDS Research and Counseling, 6(6), pp.1-2.
Rabkin, J., Remien, R. & Wilson, C. (Eds). (1994) Good Doctors, Good Patients: Partners in HIV Treatment. New York:NCN Publishers.
Weiss, C. (1991). Working with Chemically dependent HIV-infected patients on an inpatient medical unit. In (M. Shernoff, ed) Counseling chemically dependent people with HIV illness, New York: Haworth Press, pp.45-53.
Published by the AIDS/SIDA Mental Hygiene Project, School of Education, New York University
© Michael Shernoff 1996