From: MShernoff@aol.com Date: Thu, 14 Sep 1995 16:55:48 -0400 Subject: Counseling people at the end stage of AIDS I am attaching a brief article about Counseling End Stage Clients With AIDS that I'd like to post on the QRD AIDS Resources. Thanks MSHernoff@aol.com In HIV/AIDS Focus, V.2, No.1, Sept. 1995. A publication of the AIDS/SIDA = Mental Hygiene Project, School of Education, New York Universtiy Counseling End Stage Clients With AIDS Michael Shernoff, MSW, ACSW 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. Aski= ng a client questions about why he or she is making the choice to begin o= r discontinue a particular treatment and what the ramifications are of th= ose 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 spiritu= ality, dying and death, which are all inherent in AIDS work, are invaluab= le clinical skills to possess that are relevant to all aspects of practi= ce with any client population. Preparing For Serious Illness As people develop symptoms of advanced AIDS they increasingly lose contr= ol 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 i= s well he or she is more likely to have the necessary energy to plan for = these difficult realities. The counselor needs to question clients' unwil= lingness to discuss concrete plans or desires for a living will or treatm= ent options. Stress to the clients that by addressing these issues now th= ey 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 ra= ise with all clients, but especially those with a life threatening illnes= s, the issues of having prepared a will, medical proxy and living will. C= ounselors 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 rea= lities 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 paren= t 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 e= mergency. Who in their support system is aware of this? = If the client lives alone or with small children, who have they discuss= ed contacting, even in the middle of the night, to help them get to the h= ospital 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 agg= ressively do they wish to be kept alive if there is not any reasonable ho= pe 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 place= d 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 insur= e that the client's wishes will be followed even if those wishes are cont= rary 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 revis= e these instructions if any of their feelings change over the course of t= heir illness. End of Life Issues "Few people who are not profoundly depressed speak about being ready t= o die or welcoming it, except if they are in the advanced stage of a term= inal illness. People with AIDS who have become debilitated after going t= hrough 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 ho= w the client feels about approaching the end of his or her life. While in= itially making clients uncomfortable, it is my experience that clients ar= e relieved to have questions about death, dying and end of life practical= ities raised. One useful way to introduce the topic is by asking what th= e 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 p= eople to plan their funeral or memorial service, specify who they wish to= speak, what music or prayers should be recited, and where the service sh= ould take place. Similarly, confronting these details may be too stressf= ul for some individuals who can't face what making those plans means in t= erms 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 wou= ld 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, sadnes= s and discomfort. = These family sessions can help members see that once they are clear abou= t the wishes of their loved one, it will make it that much easier for the= m 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 preoc= cupation 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 the= m 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. Pain Management As Rabkin et al (1994) state, "Most people fear that they will be in exc= ruciating pain as they near death from a terminal illness. Clients need t= o be assured that they will not suffer. Most major hospitals have physic= ians who are pain management specialists who can consult with the patient= about helping him or her remain comfortable at this phase of the illness= =2E Some people prefer to be unconscious, others wish to be alert, but se= dated 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 cli= ent decides to die at home. In addition, nurses ands therapists can help= clients who experience pain by teaching them the techniques of self-hypn= osis and visualization. = Weiss (1995) states that: = "actively chemically dependent patients with AIDS usually require genero= us amounts of medication while in the hospital. Medical and nursing sta= ff often withhold the very medication these patients need, making them e= ven 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 dyn= amic and be prepared to advocate for chemically dependent patients who ar= e not being adequately medicated. Conversely some patients who are in rec= overy have unrealistic expectations regarding using any drug that they on= ce may have taken illicitly. Nurses, counselors and hospital social worke= rs 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. Cl= ients at the end of their lives can be greatly empowered by counselors en= gaging them in a discussion about where they want to die. Many clients m= ay not realize that whether to die at home, in the hospital or in a hospi= ce is a decision that they and their loved ones can and should consciousl= y make together in consultation with the physician. It can be enormously = helpful if the counselor, nurse or hospital social worker raises the issu= e 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 al= l of his or her feelings about this emotionally laden issue. Next the di= scussion 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 i= s enough." It is an essential and completely appropriate role of the coun= selor to encourage the client to explore his or her feelings about whethe= r or not to cease treatments or to continue fighting for extra time. It i= s not the worker's role to give permission for one choice or another. Dyi= ng can be a quality time both for the terminally ill person as well as th= ose who love him or her. One way to help insure this is for the worker t= o ask the client questions that will offer him or her options and some co= ntrol 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 b= e hours or days. The strength of this conviction is tested when the perso= n is not acutely and severely ill and untreatable and may have weeks or m= onths to go before an inevitable death. Such a person may be able to surv= ive physically but with such chronic discomfort and restricted horizons t= hat 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 terminal= ly ill people believe so. Once the client has decided to discontinue medi= cal procedures or drugs, often I.V. morphine is started with the double p= urpose of alleviating pain and possibly, accelerating the timing of impen= ding death. After its initiation, there may be a period of alertness for = several days, or even weeks, before death occurs. But 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 wha= t he or she feels is intolerable may in fact change. Most people with AID= S 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 suffer= ing a great deal? = Once I.V. morphine has been begun, a person may become unable to communi= cate. Therefore, prior to the beginning of a morphine drip the counselor = or nurse should look for opportunities to facilitate conversations betwee= n the dying person and his or her loved ones and family members. It can b= e both enormously helpful and comforting to the significant others of a p= erson who is dying to hear a professional ask them the following question= s. 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 th= em. = Remind him or her of a special moment you two shared that will be with yo= u forever. = Tell him or her that you love them, and thank them for the relationship y= ou 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 e= ventually 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 countle= ss personal as well as professional rewards, not the least of which is de= mystifing death and dying. As Gaies and Knox (1991) point out, "By confro= nting with dying clients the fragility of life and the value of each day,= health care professionals begin to confront the vulnerability of their o= wn lives and to acquire a deeper appreciation of living." References = 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 Pati= ents: 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. Michael Shernoff, MSW, ACSW is in private practice in Manhattan and is ad= junct faculty at Hunter College Graduate School of Social Work. Recent pu= blications include editing Counseling Chemically Dependent People with HI= V Illness and coediting (with Walt Odets) The Second Decade of AIDS: A Me= ntal Health Practice Handbook. = --PART.BOUNDARY.0.422.mail06.mail.aol.com.811112112--