What it Takes to be With Your clients to the End
By: Barry J. Jacobs
The daughter fingers the small glass-beaded necklace around her mothers neck and says, Her granddaughter gave her this one. Touching the delicate gold watch around her mothers stiff wrist, she says, This was an anniversary gift from my father years ago. After attending a dozen such viewings of deceased clients in the last few years, I know what question will come next. Doesnt she look good? the daughter asks me with a sidelong glance.
I look at her mothers body in the crushed-velvet interior of the mahogany coffin, head uplifted by the satin pillow at what, if she were alive, would be a wrenching angle. Shes in her Sunday best, with her face powdered and rouged more than Ive ever seen in the past 10 years. I respond with the requisite, Yes, the undertaker did a great job.
I suppose he did a great job of sorts, but I wouldnt say she looks good. Her skin appears taut and overinflated, and her eyelids look glued shut. Even when I saw her two weeks before, in the hospital in her last days of cancer, she still looked like a haggard version of herself. Now she looks like something else--a stone-still totem of herself, festooned with jewelry and religious medallions and too much makeup. It seems to me shes too much made up in all ways--a ruddy-cheeked object of her family members fantasy, rather than the depressive, often cranky, 70-year-old woman she was. This is her but not her, and the difference adds to the sadness I feel about losing the complex, feisty woman Ive known.
As I step away from the casket after saying my own silent good-bye, my sadness quickly gives way to awkwardness as I get in the receiving line to greet the immediate family members. The daughter and I met years ago in one of her mothers sessions, but Ive never met her sons or siblings. That doesnt mean I dont know them: for years, Ive heard about their strengths and foibles, their kind and neglectful acts. This must be the son with the drinking problem, I think, while pumping the hand of a beefy guy about my age. That prim, older woman over there, I guess, must be the tightwad sister with money. The daughter hasnt told them that I was Clares therapist; most of them havent a clue that she ever had a perturbed day in her life. Because the ethical principle of confidentiality extends beyond a clients death, Im not in a position to fill them in, either. So when one after another asks me, How did you know Clare? I respond, We used to work together. The answer isnt false; just misleading. I offer the usual condolences, but have to be careful not to be too effusive or risk raising suspicions that we were more than just office chums.
When I head out of the funeral parlor a few minutes later, slipping a Mass card into my sports jacket pocket to add to a growing collection in my top desk drawer, I feel a mixture of relief, disappointment, and doubt. I dont relish going incognito to a clients funeral. Part of me was glad to pay my respects and then quickly leave, while another part would like to have stayed much longer--to hear the family stories, to grieve openly, as would any close friend. As I climb into my car, I question my motives--yet again--for being here. Am I doing this for Clare, to honor our work together, for the familys benefit, or as a way to soothe my own loss? Am I being noble, selfish, or simply ghoulish? I drive off unsure of the answers, but knowing this wont be the last time I participate in putting a troubled client to his or her final rest.
Learning to Confront Death
This self-questioning is a hazard of my chosen profession, I tell myself. For 17 years, Ive specialized in medical family therapy, working in acute-care hospitals, nursing homes, primary care offices, and physical medicine rehab units to help clients and family caregivers adjust to such life-altering illnesses as stroke, traumatic brain injury, Parkinsons disease, cancer, Alzheimers, congestive heart failure, multiple sclerosis, lupus, and advanced diabetes. Managing responses to death has become part of my work, whether originally my intention or not. Ive aspired to helping families hang tough through medical crisis, but now spend some of my time hanging crepe.
One reason that I was attracted to this type of therapy is that I was bowled over in 1989 as a graduate student reading If Rape Were Legal, a chapter in Loves Executioner, the bestselling collection of case stories by psychiatrist Irvin Yalom. In it, he describes treating Carlos, an aggressively obnoxious man who was dying of lymphoma. Under Yaloms guidance, Carlos achieves a degree of authenticity facing his death that hed never before approached during his otherwise mean-spirited, misdirected existence. Hes so grateful that, on his deathbed, he squeezes Yaloms hand and whispers, Thank you for saving my life. This was scintillating stuff--the therapist-as-sage at the gates of Hades casting a beacon back upon his clients lives. I wanted to be just as heroic, salvaging wisdom and even redemption from medical tragedy.
But personal reasons probably provide a more telling explanation for my work with the seriously ill and dying. When I was a teenager, my father contracted brain cancer, and I saw my mother and paternal grandmother, whod always had a testy relationship, turn on each other rather than face the terror that was overtaking the family. Thus my interest, years later, in practicing medical family therapy--to help relatives pull together, not apart, in order to live as fully as possible in spite of the worry and sorrow caused by a serious physical malady or impending death.
During my own fathers last days in the hospital, though, I was enjoying my summer as a standout athlete and budding ladies man at an overnight camp 100 miles away. I wasnt there with him at his end--didnt talk with him about what he meant to me as a father, didnt console my mother at his bedside, didnt witness his life ebb away. I was at his funeral, but, following Jewish custom, we had a closed casket; I never laid eyes on him again after he died. As much as Ive tried to put this out of my mind, my absence from his deathbed has been a persistent source of guilt, which accounts, in part, for my commitment to seeing psychotherapy clients through to their deaths--to be present for them in a way that I wasnt for my own father.
Deaths Different Guises
Being present has taken different forms with different cases. Some clients have come to me for reasons other than medical problems, and only later have been diagnosed as being terminally ill. This was the case with Clare, who originally came to me for help in letting go of her adult children. She learned through therapy that she couldnt protect them from making their own mistakes. After we finished that piece of work, she returned to treatment a few years later for grief therapy following her husbands sudden death from a cerebral hemorrhage. Helping her with these life transitions--and losses--set the stage for our ultimate work together. She called me out of the blue to tell me, in a high, shaky voice, that shed just found out that she had stage-IV fulminating breast cancer. Could I meet with her to help her deal with it? I knew enough about the disease to grasp immediately that she was going to die. In the seconds following her request, I was filled with sadness, anger, and dread, but knew I couldnt say no. I truly wanted to be there for her to help with this final transition, and it was important to prove to myself (as I always have to prove to myself) that I was capable of seeing her through to the end.
We met regularly for the next seven months. Our previous history together meant that she didnt have to begin explaining her life to me at the point at which it was ending. Whether I was seeing her in my office on days she was feeling relatively well, or in a hospital room, or her home when she felt too sick, I worked hard to listen supportively while she tried to make sense of what was happening to her. Shed express her faith that shed be rejoining her husband in heaven one moment and then air doubts that God existed at all the next. My fathers death left me with a lasting agnosticism, but I respect the importance of religious beliefs to others. While I have no religious training, Ive become accustomed to encouraging dying clients to continue grappling with their deity as one way of reviewing their lives and coming to grips with their deaths. Clare, like many others Ive seen, would paradoxically talk to God about her doubts about God and the unfairness of what had befallen her family. By steadfastly listening to her, I seemed to be able to console her to some degree. Clares trust and dependence on me during this time gave me more assurance that I could tolerate loss, even if our years of working together made losing her all the more painful for me.
Another situation is that of a client whos been struggling with a life-altering, not life-threatening, illness, one that suddenly becomes fatal. In an early experience as a psychologist in a physical rehabilitation hospital, I worked as part of a treatment team that included physicians, social workers, and physical, occupational, and speech therapists striving to help Lori, a 16-year-old girl whod suffered a traumatic brain injury after being struck by a drunk driver. Over a five-month period, we were excited cheerleaders, coaxing her steady physical and mental recovery. Her youth and determination propelled her forward--until the morning she didnt wake up.
Even after an autopsy, the cause of her death remained a mystery. Her parents, siblings, and medical team were devastated. At the standing-room-only funeral, the members of the rehabilitation group occupied a long, oak pew toward the back of the packed hall. As solemn uncles, teary-eyed teachers, and sobbing classmates took the microphone to laud Loris life and lament the double tragedy of her senseless accident and inexplicable death, the team cried along with the other mourners. I was caught up in the moments overwhelming sadness over Loris lost youth and dreams, yet I also felt uplifted by being part of a grieving community that celebrated her.
The spirit of this ceremony contrasted so markedly with the one for my father, at which my mother and fathers relatives glared at each other from opposite corners of the receiving room. Loris funeral taught me that death can unify us in a greater appreciation for living, because, in that crowded church, we were kindred spirits marking the fragility of life, not combatants resorting to anger to avoid our emotional agony. It gave me the conviction that I wanted to participate in and foster rituals that healed families, as a person and as a therapist.
Later on, Loris parents and siblings came to me for grief therapy. The fact that Id seen her pushing herself to walk using the parallel bars in the physical therapy gym and had heard her struggling to express her thoughts and feelings in halting speech mattered enormously to them. The fact that Id gone to the funeral and cried with their neighbors, family members, and friends meant that I shared in their grief. On the second anniversary of Loris death, they invited me to their house, where they showed me her bedroom, with its posters of rock stars, piles of paperback novels, and bottles of inexpensive perfume still in place. They took me to her small, tidy grave, where we held hands in a circle, closed our eyes, and said a prayer aloud. I was grateful to be included as a friend and fellow mourner in this gesture of remembrance and love.
Yet another type of client is the one for whom dealing with death, or at least its strong probability, is one of the treatment goals from the outset. Don, who was 50, and his 45-year-old wife, Trish, came to me for marital therapy to help them settle screaming matches between them about who should do which household chores and how to contend with his hostile first wife. Trish also said as a by-the-way toward the initial sessions end that she wanted me to convince Don to take better care of himself, since a recent X-ray had revealed a large mass in his right lung. I quickly allied with her to persuade him to go for the follow-up lung biopsy hed been putting off. The mass turned out to be a high-grade cancerous tumor.
Youd think that, given the dire situation, theyd have joined in a united front against fate, but the couple never stopped fighting: they just shifted the focus of their disagreements to how they were going to deal with Dons likely death. He contended that hed worked hard all his life and was entitled to do what hed always dreamed of doing before he died, but his plan to take all their assets, buy an RV, and roam around the country until he faded off into the sunset left Trish cold. She had no interest in quitting her job, visiting national parks and historic places, and potentially squandering whatever money might be left after the medical bills and hefty funeral expenses. It was an irresolvable stalemate in which he railed and she ranted until death (mercifully) parted them.
Don and Trish taught me the humbling lesson that I couldnt always bring family members together to face illness. Even more, they revealed to me how naive my preconceptions about caring for people at the end of life were. Id long fantasized about what Id have said to my father before he died if Id been around. Those fantasies were shaped by my own innermost longings to have made my fathers end easier and more fulfilling, and by what Id read in the hospice and family therapy literatures about the good death. Yalom had shown the possibility of therapist-mediated salvation at deaths doorstep. Others painted the idyllic scene of family members standing around their loved ones bed, pouring out their hearts about how much the dying relative meant to them while the soon-to-be-deceased forgave them all for old sins and slights.
When I tried to fashion this kind of good death for Don, my efforts were forcefully stymied. A meeting with him, his two adult children from his first marriage, and Trish about two weeks before his death quickly broke down into squabbling over which one of them would have to take off work to stay home with him. Before they could negotiate a mutually agreeable arrangement, Trish and the children turned on me for upsetting Don by bringing up the unpleasant topic of his need for care. I did a quick back-pedal, saying somewhat defensively that I was seeking to create a climate of cooperation and consolation among them.
When I went to visit Don at home a week later, I found him in a hospital bed in the living room, chain-smoking cigarettes that the home health-aide kept lighting and placing between his trembling fingers. After the aide left the room, I asked Don how he was. He grunted in response. When I invited him to talk about how he was feeling about what was happening to him, he blew a thick stream of smoke toward the ceiling and said quietly in a hoarse voice, Barry, cut the psychological crap. I held my breath in the short silence that followed, as much to regain my composure as to avoid inhaling the gray cloud that now filled the room.
It occurred to me that he was certainly angry, but I wasnt entirely sure that hed meant his comment to be hostile. Don wasnt the soul-searching type. My invitation to reflect upon his wretched condition may have been as appealing to him as a priests insistence that a parishioner go to the confessional. I quickly dropped the pretense of facilitating his good death. We talked about Trish and his kids after that. We talked sports. When he asked me to fetch him a clean ashtray, I was only too glad to be of concrete help.
I had a similarly disarming experience working with Marge, a 73-year-old woman who was dying of emphysema. Despite the fact that shed moved into a residential hospice to spend the last few weeks of her life in greater comfort, she had no interest in the good death I was offering to facilitate for her. Each time I tried to bring up that her shortness of breath was becoming more severe and her time might also be growing shorter, she responded in an irritated rasp that her doctor had a new drug that might help her breathe better. Rather than challenge her denial about her impending death, I was reduced to supporting these statements or risk alienating her completely.
Early one morning when I arrived at the hospice, her nurse met me in the hallway to relate with sadness that Marges breathing had gradually slowed overnight and she had passed away peacefully about an hour earlier. She said I could go into Marges room to see her if I wanted. The idea intrigued me. I wanted to pay my respects to this woman, who, though refusing to discuss her looming death, had been otherwise shyly charming. But I had more personal reasons. Id never been so close to death before--had never been in such proximity to the point at which the spirit departs the body; had never seen a departeds body without the heavy touch of the morticians palette. I wanted to understand death better, to grasp the passing of every client Id had and my fathers passing as well. I hoped that Marge would forgive my voyeurism.
As I entered the room, I saw her lying straight on the bed with her mouth gaping open, her grayish face drawn, and her thin chest sunken, as if emphysema had finally succeeded in sucking all the air out of her. I sat down in a chair by her bedside, but didnt dare touch her. I wanted to dignify the moment--to make it a good death if only after the fact--but could think of nothing profound to say. I sat motionless for a few moments, feeling queasy and out of my depth. In that instance, the idea of a good death seemed like a mawkish intrusion upon the fact of her cool corpse. Worse, the notion that I could proffer deaths good or bad struck me as unbearably pretentious. After averting my eyes from her still face and mumbling an abashed good-bye, I bolted out of the room to wait for her family downstairs.
Taking People as They Are
Ive now accepted the variety of ways people react to their dying. There are those whose deaths are good, who can tolerate facing their fears and regrets, and impart a gift of thanks and even wisdom to the grieving relatives they leave behind. Then there are those who shut their eyes to the prospect of death until the instant theyre terror-stricken at the first glimpse of the white light. Or they expend their waning energies lashing out verbally or physically at those around them, as if trying to stave off the Grim Reaper. Mostly, though, people are neither noble nor horrid at the end. Theyre anxious about the unknown, saying fearful things or wearing pained expressions that make their loved ones uncomfortable. If theyre in hospice care, theyre likely to be doped up on morphine and to pass in and out of agitated confusion. All of these ways of facing death are utterly ordinary and human.
As a seasoned therapist, I sometimes feel I should be more skilled at facilitating better deaths for my clients. Perhaps if Id been closer to my fathers death or was less hobnailed by guilt, Id have the personal wherewithal to manage it. Instead, Ive become a living testament to cognitive dissonance theory--casting doubt on ideals that I cant seem to achieve. At best, the Dons of my practice have stonewalled my appeals to their emotions; at worst, theyve reacted angrily to the criticism implicit in my invitation to approach their deaths differently. Consequently, Ive stopped aiming so high. For the occasional Clare, Im all spiritual values and existential truths. For most others, though, I merely try to provide comfort. If they reject any consideration of the hereafter, Im all in favor of focusing on the here-and-now. If they quail at deaths door, Im willing to hold their hands to keep them on this side of the divide for even a moment longer. If, in their panic, they cant help but lash out, Im ready to absorb their frantic blows.
I take a similar tack with their relatives. Im careful not to overrun denial of impending death--its the last remaining sanctuary of many frightened family members. While I wont say that their loved one isnt going to die when Im sure he will, I have no interest in persuading them to adopt my clinical viewpoint. Instead, I raise contingencies: If your loved one is going to survive, what role do you want to play in helping him during his illness and afterward? But if your loved one should succumb, what role do you want to play to help her before that occurs? Are there things you want to say or do for her--just in case? Family members arent entirely thrilled with this line of questioning, but they tend to tolerate it better than a direct confrontation about the oncoming end. Afterward many are thankful they made some allowance in their calculations for their loved ones demise, and took that opportunity to have a deep talk or give an especially firm hug.
With those family members who seek therapy with me later to better deal with their bereavement, I frequently have to contend with the Elisabeth Kubler-Ross curse. The famous Swiss psychiatrist, who died in 2004, devised the now commonly accepted stages of normal grieving--denial, anger, bargaining depression, acceptance--in 1969. In doing so, she taught the world that its perfectly appropriate to have a range of feelings after the death of a loved one, but her work has stuck in the popular consciousness as a simplistic recipe for the correct way to grieve--that is, having the right feelings in the right order. Ive seen too many clients over the years judge their own mourning as inadequate or incorrect if they dont adhere to the letter of her model. To counteract that, I try to teach them to accept whatever theyre feeling at whatever time, even if they arent feeling much of anything about their relatives demise. I also counsel patience, saying that, in my experience with many bereaved clients, full-blown grief unfolds in a variety of guises for one to two years following the funeral, and that the lingering sense of loss never entirely disappears, but continues to shift and change gradually as time goes on.
I try to apply these lessons to my own grief for the dead. I mourn my clients and miss them. I go to their funerals to be comforted as well as to comfort. As awkward as it sometimes is for me to be there, I get solace from knowing that my sadness is shared by others in attendance. I also get a richer sense of my client, the cast of characters in his world, and the drama of his life. Often this comes from looking at the photo montages that are always at these events, containing such images as the deceaseds grade school portraits, party poses from his drunken-sailor days, and shots of him surrounded by laughing children at sun-filled picnics. Sometimes I gain insights from striking up conversations with or eavesdropping on the reminiscences of the neighbors, former coworkers, and distant cousins standing in line near me at the viewing. They frequently tell stories of the departed as if each wants to convey some little piece of the persons life that only he or she knows. Its a reminder that whatever went on in the therapy room--however many secrets were divulged or however privileged I felt hearing them--gave me only a small window on who the person really was. This new knowledge becomes part of my understanding of and appreciation for my client as I think of him from time to time in the years ahead.
As for my grief over the loss of Dad, patience does pay off to a degree. My feelings have slowly changed. Id like to think that Ive now come to accept that I did the best I could as a 15-year-old boy to cope with my fathers decline and death. Yet I can recognize that my professional life probably has been something of an attempt at expiation. Its surely also an effort to gather data to answer the eternal mysteries that plague us all: How did my father face his end? How do we all face our ends? What do our lives mean once theyre over? And, perhaps, where do we go? If youre looking to me for the answers to those questions, though, Ill have to get back to you on it.
Recently, a middle-aged female client whose kidneys are failing asked me sheepishly if Ill attend her funeral one day. I heard in her query a request to be there for her because she anticipates that few of her estranged family members will attend, but I also detected a question about whether I care enough about her to remember her and mark her life. I said without hesitation, Of course. When I made the commitment to be her therapist, I agreed, in my mind, to see her through her illness to her final send-off, and to carry her memory with me afterward. Now that she knows that Ill be there for her in that way, our relationship has deepened. She and I now spend time reflecting on her life and what she believes will happen to her after shes gone. She has even told me what she thinks her funeral will be like. Presuming I dont die first, Ive promised her that, in my casket-side prayers to her while staring down at her painted face, Ill fill her in on the details of her big event.
Barry J. Jacobs, Psy.D., is the director of behavioral sciences for the Crozer-Keystone Family Medicine Residency Program of Springfield, Pennsylvania, and the author of The Emotional Survival Guide for Caregivers--Looking After Yourself and Your Family While Helping an Aging Parent. Contact: email@example.com. Letters to the Editor about this article may be e-mailed to firstname.lastname@example.org.