by Linda J. Griffith, MD
Dr. Griffith is Board Certified, American Board of Psychiatry and Neurology, American Board of Family Medicine, American Board of Hospice and Palliative Medicine, Certificate of Added Qualifications in Geriatrics; is Medical Director, Consolidated Care, Inc., Champaign, Logan, Union Counties, Ohio; and is Clinical Assistant Professor, Boonshoft School of Medicine, Wright State University, Dayton, Ohio; Dr. Gillig is Professor of Psychiatry, Department of Psychiatry, School of Medicine, Wright State University, Dayton, Ohio.
Editor Note: This is a follow-up article by Dr. Griffith that concerns psychotherapy and medical issues that can be involved when working with the terminally ill psychiatric patient who has a supportive family. All cases presented in the series “Psychotherapy Rounds” are composites constructed to illustrate teaching and learning points, and are not meant to represent actual persons in treatment.
Abstract
Psychiatrists can offer much in the care of the person who is chronically mentally ill and who is dying of a medical illness. In community psychiatry, the psychiatrist and other members of the treatment team often care for a patient over many years, and gradually learn about a patient’s wishes and preferences, strengths and limitations, areas of support, and lack thereof. A psychiatrist can combine this knowledge and understanding with a capacity for empathy in order to provide many of the necessary elements for palliative care, including psychotherapy, during the final phases of our patients’ lives. The composite case presented in this article is the second installment about the treatment of a gentleman with chronic schizophrenia who was enrolled in hospice after his pulmonary and cardiac disease began to progress rapidly, and who believed that God and the devil were arguing over his eternal fate.
Key Words
palliative care, schizophrenia, hospice, lifestyle changes
Print Citation
Psychiatry (Edgemont) 2007;4(12):49-54
Introduction
We present the second installment of the case of a dying man with chronic schizophrenia who was enrolled in hospice after his pulmonary and cardiac disease began to progress rapidly. As our patient entered into his last weeks of living, he expressed his belief that God and the devil were arguing over his eternal fate.[1]
It is an interesting process by which one decides as a psychiatrist how much to tackle when it comes to our patients’ spiritual lives. In particular, we may question how to feel confident that we understand what is healthy or unhealthy about our patients’ spiritual lives in the context of a psychotic disorder that, by definition, distorts normal thought processes. In a related context, Dr. Harvey Max Chochinov, a well known psychiatric palliative medicine doctor, was recently quoted as saying, “Depression should be addressed, but not in isolation. There’s usually far more going on…a combination of physical, psychological, and existential issues. In addition to [being aware of] DSM-IV morbidities, psychiatrists need to be aware of this exquisitely painful and complex landscape, and to approach these issues with humility and open-mindedness.”[2]
Practice Point: Spirituality versus psychotic hyper-religiosity
If hyper-religiosity develops in a patient with a known psychotic disorder, such as bipolar mania, whose current religious ideation bears no resemblance to that of his or her normative self, one feels confident that the apparent religious content is not reflective of the patient’s true spiritual beliefs. Similarly, if a patient with schizophrenia and chronic delusional ideation presents with thoughts about God that are far outside the bounds of his stated religion, a psychiatrist can feel on solid ground in assessing the current religious talk as psychotic. More commonly, however, religious concepts are introduced by the patient in a more elusive manner. This can leave the psychiatrist, or any physician, with his or her own fears and doubts about how and where to tread.
Knowledgeable experts can disagree regarding how much a physician should delve into things spiritual in nature. One articulate discussion by an ethicist, a psychoanalyst, and a theologian, concludes with the following points: 1) The ability to inquire into the religious and spiritual life of patients is an important element of psychotherapeutic competency; 2) Information about the religious and spiritual lives of patients often reveals extremely important information; 3) The inquiry process must communicate respect and curiosity for this dimension of the patient’s life even (and perhaps especially) when the content is at variance from that of the therapist; and 4) There is a significant potential for therapeutic abuse when the therapist communicates in a manner reflecting a personal agenda that abandons the principle of psychotherapeutic neutrality.”[3]
Case Presentation
I asked Mr. P, “Is anything worrying you about what will happen to you?”
“Pretty soon I won’t be able to get my breath at all…then I guess I’ll die,” he answered.
“Do you have any fears about dying?” I inquired.
Mr. P suddenly looked frightened. “I suppose I might go to hell.”
“It looks like that thought is pretty scary for you.”
“You bet it is!” he exclaimed.
“Is there something in particular that has you worried?”
He hesitated. “Well, yeah.” We shared a moment of silence and then he spoke again. “You know, I did some bad things. Sometimes I didn’t know how to do good. I would hear the devil arguing with God over me. Then I knew I was really bad.”
“That must have been hard to hear.”
Visibly distressed, he queried, “How ya supposed to do good when the devil is always screaming in your ear?!”
“That is a hard question to answer. Is the devil screaming in your ear right now?”
“Nah…no screaming. I don’t hear him no more.”
“Do you think it’s possible that the screaming you heard was part of your schizophrenia?”
Mr. P paused for a moment and looked perplexed. “Nah…I really heard him…I know I was listening to the devil and doin’ his ways.”
Practice Point: Cultural competence with respect to religious concepts
It can feel disconcerting to bring up subjects related to religion or death and dying, but it is generally a tremendous relief for patients to have someone with whom they do not need to hide their concerns. Current psychiatric training emphasizes cultural competence including developing the capacity to take a religious or spiritual history.[4] The goal is being “spiritually informed,” i.e., recognizing the important role spirituality and religion play in many individuals’ lives, and feeling comfortable with referral to pastors, rabbis, imams, or other religious or spiritual practitioners as appropriate. Use of open-ended questions allows the physician to assess the patient’s readiness or desire to discuss end-of-life fears and hopes. An effort is made to find the words or metaphors the patient uses to describe a target of faith. One guideline for such interviews uses the mnemonic FICA for Faith and belief, Importance, Community and Address in Care (Table 1).[5]
It is fairly routine in therapy for the psychiatrist to pick up on the words or phrases a patient uses to describe life circumstances and later utilize those same terms to reinforce empathy or to illicit the patient’s understanding. Similarly, patients will often supply a religious metaphor they use to give meaning to or to understand the “big picture” of life. For Mr. P two such metaphors are those of God and the devil and of heaven and hell. These metaphors are frequently used in the Judeo-Christian tradition to explain the very human phenomenon of going back and forth in your own mind regarding whether to take the moral high ground or to succumb to the desire for more base pleasures. It is often depicted in cartoons where a person grappling with a compelling dilemma is shown with a little angel figure on the “right” shoulder and a devil on the left. Another frequently cited depiction is the Biblical story of Job in which God permits Satan to tempt Job into cursing Him.[6] It is common for psychiatrists to “pathologize” a patient’s religious interpretation of life, but instead we can learn to see our patients’ uses of particular stories as their means to understand their lives’ quandaries.
In our case example, Mr. P presents a common human struggle with a psychotic twist. Often the issue with psychotic patients is not that they organize their inner world within a religious framework, which many people do, but that they lose track of what is the framework versus what is actually happening right in front of them. If manic, they also tend to lose discretion about social appropriateness and thus freely and expansively expound upon their now distorted framework.
Case Presentation, Continued
One day, during a visit with Mr. P, because of his recently expressed concern, I broached the subject of heaven and hell with him. “A lot of people have concerns about heaven and hell when they are very sick. I’m not much of an expert on religion. Do you have someone you could talk to about that?”
“I don’t really talk to the pastor much,” Mr. P answered.
“Would you like me to tell him about your illness and what you are afraid of? Then maybe he could come visit you to help you with your fears.”
“Nah,” Mr. P replied, “I don’t want him to know what I done.”
“Has anyone told you about the hospice chaplain? She is available to talk with hospice patients about their spiritual or religious concerns.”
“She won’t tell no one?”
“No, she would only talk with someone if you wanted her to.”
“I guess that would be all right.”
“It isn’t unusual for people who are dying to wonder if they have led a good life.”
“I wonder that,” he answered simply.
“What have been the most important things in your life?”
Practice Point: The psychiatrist and religion
When one is treading in unfamiliar religious territory, it is wise to recognize what you do and do not know and what you can and cannot offer the patient. We need to recognize how our own points of view are similar to or different from that of our patients to minimize the impact of counter-transference. Given our place of authority as physicians and the power of transference, any recommendation regarding what patients should do or think within their religious or spiritual framework can potentially carry much more weight than we intend. In addition, psychiatrists as a group have been found to be less likely to classify themselves as religious and less likely to use religion to cope than the average physician.[7] This may leave us vulnerable to fears of getting it wrong for the patient, as we are treading in what may feel to us like uncharted waters.
One course of action is to inquire about whether there is a clergy member the patient honors and feels safe with. Not every religious contact will be a helpful resource. Most of us have experienced individuals who have been hurt or at least frightened by religious proclamations received in childhood, such as the fear of going to hell. Hospice chaplains, as with most pastoral counselors, are trained to respect individual religious preferences and help the devotee to work through his or her own faith struggles with a supportive audience.[8] The psychiatrist, however, needs to ensure that underlying existential issues are not ignored in our attempts to not cross religious boundaries. It is normal for individuals at the end of life to wonder about whether they have lived a good life, whether they have reached hoped-for goals, and whether anyone will remember them when they are gone, i.e., whether their lives had value and meaning.[9] Such topics are well within the purview of a psychiatrist (Table 2). Interestingly, a psychiatric ethicist recently mused about how strategies regarding meaning at the end of life which have been developed by palliative care psychiatrists, such as Chochinov and William S. Breitbart, could be applied to the routine psychiatric history. He posits that an inquiry into a patient’s sense of meaning could be part of a “future history.”[10]
Case Presentation, Continued
As expected, over time Mr. P became more weak and tired and spent a large portion of his day sleeping or dozing. Of necessity, our contacts became increasingly brief. Silences were often born of dyspnea or fatigue rather than resistance. As the end of his life drew near, the silences were also often born of the patient drifting off into a light slumber. Initially he could be roused by calling his name, but subsequently required a light touch.
“It’s more difficult to stay awake now, isn’t it?” I asked Mr. P.
“Yah.” Mr. P gave a weak smile.
“What would you like me to do if I come for our session and you are asleep?” I inquired.
“Well, I don’t mind if you wake me up.”
“Are you sure?”
“There are always people comin’ around waking me up for one thing or another.”
“What would be the best way for me to wake you up…I don’t want to startle you.”
“Aw, just give me a little shake.”
“You know that normally I don’t touch anyone in therapy…are you sure a little shake is OK?”
“I don’t mind…no other way to wake me up.”
“How about if I touch your shoulder, right here?”
“That would be OK.”
“If you don’t wake up with a little touch, I’m just going to let you sleep,” I stated. “If that happens, would it be OK with you if I chat with your wife about how things are going for her?”
“Sure…I’m not much use to her around here no more.”
Practice Point: Entering the dying patient’s home
Making the decision to conduct psychotherapy in a dying patient’s home brings about some interesting boundary crossings and changes from usual practice. Do you touch? Do you rouse a sleeping patient? Do you conduct therapeutic phone conversations? Do you conduct a session with a spouse, a hospice nurse, social worker, or a family member in the next room or even in the same room? Do you switch back and forth to talk with the patient’s wife or child when the patient drifts off? The caregiver is certainly also in need of support specifically tied to your patient, the recipient of his or her care, and becomes a surrogate patient. In hospice, the patient and family are the target of care,[12] and similarly the focus of psychotherapy may become more marital or family inclusive.
It was an interesting phenomenon to see that as Mr. P approached death, a touch from which he would have previously recoiled (and which would not have even been considered in our original therapeutic context) became something to which he could alert without apparent fear or paranoia. It seemed to be a reflection of his recognition that things were different now. He needed to accept help, including quite personal touches by his wife, as well as by aides and nurses, during this final stage of his life.
Case Presentation, Continued
With his gradually worsening condition, visits by the hospice staff increased, both for support of the patient and his spouse. Frequently a variety of children and grandchildren would spill into the living room, where his hospital bed was tucked in among the stuffed chairs and bookcases and television. When he was still able, he would retreat into his bedroom, his inner sanctum, and his family honored his need to do so. When he became bed-bound and this was no longer an option, his need for privacy and quiet was specifically discussed with the family who agreed to time their visits to avoid having too many people in the home at once. The hospice staff did so as well.
“How is it going having so many people in the house?” I asked him at my next visit.
“Sometimes…it gets me all nervous…then I can’t breath,” he replied.
“Are you getting any medicine for that?”
“I can use this…breathing machine.”
“Does that provide you enough relief?”
“Maybe for a few…minutes.”
“How is it for you having so much time with your children around?” I asked him.
“I’m getting’ kinda…used to it. David said…he loves me. He never said… nothin’ like that to me before.”
“How did that go for you?”
“I did wonder why he was sayin’ that. Guess he thinks I’m about to kick the bucket.” Mr. P showed a flicker of a smile.
“Maybe he wanted to let you know he loves you while he still can.”
“Yeah…” Mr. P replied, “and Margaret…washed my face.”
“Did that feel OK to you?”
“At first I asked her to stop. She said it might…make it easier…for me to breathe, so I let her do it. I did feel…a little less nervous… after that.”
“Have you seen your granddaughter?”
“She climbs…right up here in bed…with me. I don’t know…what to make of that.”
“You are important to her.”
“I guess so. Never really thought…I was much use to nobody.”
“What do you think about that now, with everyone showing you their affection?”
“Maybe I won’t…go to hell…after all…” Mr. P was asleep.
Practice Point: Suggestions for alleviating suffering
There is much that can be done to reduce the suffering of individuals dying at home. Family members can be taught to provide a variety of comfort measures that can ease distress. They can turn a gentle fan toward the face of their dyspneic father; raise the head of the bed; ensure he is changed into cool dry clothes if he is perspiring; wash his face with a cool cloth; sit quietly beside the bed or read to him; play his favorite tunes; or just reminisce. As noted above, they can ensure he has quiet times and is not swamped with more stimulation than he can tolerate, in this case to keep his level of paranoia within tolerable limits.
Pharmacologically, there are a variety of techniques that can be tried, always carefully balancing benefits with side effects, in light of the patient’s goals of care. Benzodiazepines and opioids have their place in the palliative treatment of dyspnea and associated anxiety, but need to be titrated carefully to avoid over-sedation.[13] If the individual has more than a few weeks to live, antidepressants can be effective for anxiety.[14] Stimulants are used to relieve excessive fatigue associated with opioid dosing as well as with debilitating illness.[15] Palliative sedation is an option for unremitting suffering, such as pain or dyspnea that is unable to be relieved by the usual means.[16]
Case Presentation, Continued
In the last days there was little verbal exchange and with a touch Mr. P would visibly relax. It cannot be overstated that the issue of touch was discussed openly before it occurred and, in the end, permission was also sought from his wife who was generally sitting nearby. With the use of touch, the psychiatrist must also honor his or her own comfort level regarding touch, as patients can often tell, if only subconsciously, that a touch is given with reluctance.[17]
At what turned out to be our final visit, Mr. P had a clear agenda.
“I…don’t…want…to…suffocate.”
“Do you feel like you are suffocating right now?” I asked him.
“I…think…I’m…goin’… to die…soon…” he replied.
“Is there something you would like me to do?”
“I…don’t…want…to… suffocate,” he said again.
“You don’t want to have that feeling of suffocating as you die?”
Mr. P nodded weakly then closed his eyes.
“Do you want some medicine to help you not feel out of breath?”
Another nod.
“Do you need something right now?”
His head drifted slowly right then left.
“You want something available for right when you die?”
“Yes.” The sound was barely audible.
“Did you know the hospice nurse has given your wife a kit of medicines to help you stay comfortable when your time comes?”
He opened his eyes.
“It has medicine in it to give you relief. They might make you very sleepy. Is that OK with you?”
He nodded again.
“Your wife will also call the hospice nurse to be here when you die if you want. Or you can be alone with your family.”
“Nurse,” he said faintly.
“I will let your wife and the nurse know that you want them both here when you die.”
Mr. P looked me directly in the eye and gave the last nod that I would see.
Practice Point: Goals of care
Hospice care, just like psychiatric care, is all about treatment goals—the patient’s goals and often also the family’s treatment goals, which in hospice are usually referred to as the plan of care.[18] One group, “Aging with Dignity,” refers to these as the patient’s wishes and has developed a questionnaire called the Five Wishes as a tool to assist in advanced care planning for the assessment of what the patient hopes for at the end of life.[19] In the arena of chronic mental illness, a brochure and workbook has been developed called Do It Your Way.[20]
For Mr. P, goals of care included a preference to have his symptom of dyspnea controlled at the expense of being fully alert. He also preferred to have a limited number of people in the home at any given time versus being thoroughly surrounded. Other individuals with different premorbid histories might make different choices.
Practice Point: Impact on the psychiatrist of working with a dying patient and supportive family
As the end drew near, increasingly my contact with Mr. P became less “patient” and “psychiatrist” and was more readily acknowledged by me as one unique mortal being a witness for another. To be at the bedside of a person dying at home will allow you to be in touch with your own existential angst as well as hopes. It is not unusual for those of us who work in hospice to come to look at the whole process of dying with a sense of awe. For many, it heightens a sense of the reality of the soul and the sacred nature of life and its passing. For those of different religious or spiritual backgrounds, it might be viewed merely as the final act or inning in a great game of living, but it cannot fail to give one pause to wonder about the universe and our place in it.
I was not there when Mr. P died. From this time forward his family and I will have to look to our memories to “bring him alive.” Just as one chooses to use, or not use, certain metaphors in the patient’s therapy, similarly one can choose whether or not to refer to the death using the family’s metaphors, such as passing on, slipping behind the veil, being with the angels, or having a home-going. For Mr. P’s family, they are sure he is at peace with God. They have a strong sense of his ongoing presence among them. His death brought an already tolerant and supportive family into an even closer bond due to the gentle and caring education of the hospice nurses, social workers, and chaplain. Indeed, they had developed the skills to not only handle it, but to welcome that the death of Mr. P occurred “right there in the living room.”[1]
References
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6. Book of Job. In: The Holy Bible, Revised Standard Version. Cleveland, OH: The World Publishing Company, 1962: Chapter 1: verses 6-12.
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17. Milakovich J. Differences between therapists who touch and those who do not. In: Smith EWL, Clance PR, Imes, S (eds). Touch in Psychotherapy: Theory, Research, and Practice. New York: Guilford Press: 1998:74–91.
18. http://apps.leg.wa.gov/wac/default. aspx?cite=246-335-085 Access date: October 3, 2007.
19. www.agingwithdignity.org/5 wishes.html. Access date: September 30, 2007.
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