Good Palliative Care for a Patient with Schizophrenia Dying of Emphysema and Heart Failure

Abstract

Psychiatrists can offer much to the care of people who are chronically mentally ill and who are dying of a medical illness. In community psychiatry, the psychiatrist and other members of the treatment team often care for patients over many years, and gradually learn about patients' wishes and preferences, strengths and limitations, and areas of support and lack thereof. This database joins together with the psychiatrist's capacity for empathy to provide many of the necessary elements for palliative care during the final phases of these patients' lives. This composite case illustrates the treatment of a gentleman whose chronic schizophrenia was fairly well controlled until his pulmonary and cardiac disease began to progress rapidly.

Case Presentation

Mr. P is a 67-year-old married man of northern European descent. He is one of a handful of elderly patients I received in transfer several years ago from a retiring colleague. He bore the telltale yellow and brown stains of nicotine dependence on his fingers. He found his residual psychotic symptoms in the tolerable range, and the barely perceptible chewing movements around his lips were not troublesome to him and were not progressing. He had never tried any street drugs, and his alcohol-consuming days were a thing of the past. He loved his cigarettes, however, and felt they were critical to controlling his residual anxiety. He strongly opposed any medication adjustment and was particularly reluctant to consider a trial switch to a second-generation antipsychotic, noting, “This medicine (haloperidol) has always worked before and I can afford it.”

Our appointments initially were very brief and upbeat. Mr. P had the good fortune of having a wife who was very tolerant of his negative symptoms and enjoyed his disinclination to meddle in household affairs. In contrast, she was not at all tolerant of positive symptoms and immediately insisted he be evaluated if any such symptoms reared their heads. His children followed their mother's lead and held the view of, “That is just the way Dad is.” Although he was somewhat reserved about showing physical affection toward his grandchildren, he clearly was pleased when talking of their antics.

Then the coughing began. “Darn cigarettes,” he noted.

“Have you ever considered getting rid of them?” I tentatively queried.

“My kids wish I would,” he replied.

“They care about you.”

“Yeah.”

“Are you ready yet?” I asked him.

Mr. P. laughed and shrugged his shoulders.

“Would you be willing to think about it?” I asked.

“I suppose.”

Practice Point—When to Advocate for Lifestyle Changes for the Dying Psychiatric Patient

The incidence of smoking among patients with schizophrenia is very high, generally thought to be between 70 and 90 percent.¹ The incidence of premature death is also excessive, and although one might conclude this is due to the increased rate of suicide in such individuals, in fact it is often associated with the expectable sequelae of years of high-dose cigarettes. Although many physicians feel a sense of helplessness in the face of nicotine dependence in the schizophrenic population; in fact, many patients with schizophrenia are able to quit with the proper motivation and coaching.² In the dying patient who is suffering from a respiratory illness, smoking cessation can be highly beneficial to quality of life, if it can be achieved.

Case Presentation, continued

Unfortunately, shortly before his next follow-up appointment, Mr. P's wife reported that Mr. P had been much grouchier lately, accusing her and their children of a variety of misdeeds. On examination, Mr. P did not present in his usual cheerful manner, but was now tense and irritable. He reported his family members would not leave him alone. He endorsed hearing a voice telling him his son was going to have him locked up. Mr. P reported taking his medications regularly but smoking more. He coughed frequently during the appointment. After determining that he was safe to return home, we discussed what might have precipitated this change. He said even his grandson was now pressuring him not to smoke.

“I am going to smoke no matter what they say,” Mr. P told me.

“You know that is definitely your own decision to make,” I replied.

“You bet it is.”

“Did you know that the nicotine in cigarettes can make your medication not work as well?”

“No.”

“I think it is possible that your smoking more than before might have made your medicine not work as well…do you think maybe you were smoking more because you were so angry about the idea of your family forcing you to quit?”

In the interim between appointments, not unexpectedly, Mr. P's coughing worsened substantially. He generally mistrusted physicians and avoided contact with them, but on the urging of his wife, he saw a family medicine specialist. He received a diagnosis of chronic obstructive pulmonary disease (COPD) and was placed on an inhaler. He also received the expected advice to discontinue cigarettes. It took several attempts, but he was eventually able to remain completely off cigarettes.

Although quite shy and self-effacing, he responded with apparent pride to words of congratulations and praise regarding this accomplishment. We talked about why he was finally able to kick the habit after all these years.

“I didn't really care if I died,” Mr. P told me, “but my daughter told me she wanted me to live and teach my granddaughter to fish.”

Unfortunately, the underlying damage to his lungs was already done and at each subsequent session his worsening dyspnea, increasing fatigue, and general demoralization were apparent.

Practice Point: Stages of Change

It is not unusual for all individuals to struggle with their determination to stop a lifelong habit, such as smoking, moving farther from and closer to their decision to change over time. As presented by Proschaske and DiClementi³ in their classic article on stages of change, many patients present to us with absolutely no desire to change a habit, such as smoking, but for a while Mr. P had clearly begun to consider the idea at the prompting of his children. He would have been in the contemplation stage in regards to his beloved cigarettes at that point. After a recurrence of some of his psychotic symptoms, Mr. P moved back into the precontemplation stage and was not in a particularly “teachable moment.” Providing a nonjudgmental stance and useful information helped move him back toward contemplation and ultimately to the preparation and action stages for making a change.³

It is fair to ask why one would encourage a terminally ill patient to discontinue cigarettes, particularly given the additional stressor of a comorbid mental illness. Naturally, getting rid of the toxic smoke can slow the disease process, but change is about the patient's goals for his or her life, and we must make no assumptions about what our patients find worth changing for.

In Mr. P's case, his hope for enough additional time to fish with his granddaughter became a goal that overrode the desire to smoke. Interestingly, there were not many people he would have wanted to share time with, given his residual paranoia. We might have been inclined to not intervene in his smoking, asking ourselves, “Why take away his last pleasure?” Had he been a more poetic man, the answer to that might have been “To gain another more lasting pleasure.” Like other terminally ill patients, it also became important to him to leave a legacy. Although Mr. P probably could not articulate this desire, in fact that is exactly what he was doing by sending his granddaughter off into a life that included his primary joy of sitting quietly outdoors with memories of their fishing together. Will she one day go on to teach her children, and her children's children to fish?

Case example, continued

Mr. P eventually required continuous home oxygen. Although weak, he recovered his sense of humor and joked about his “dancing partner,” the oxygen tank. He began to lose weight and appear more frail. It was then that supportive therapy that was focused on his loss of vigor and his impending death began in earnest.

“How are you handling all this extra medical treatment?” I asked him one day.

“Aw, I guess all right…I really don't like seeing the doctor,” he replied.

“What has your doctor told you about what to expect from your emphysema?”

“Well, it's not so good, I guess.”

“What about it is not so good for you?”

“I don't have no energy and it's hard to breathe.”

Practice Point: Evaluating Neurovegetative Symptoms in the Face of Physical Deterioration

In the medically ill, it can be difficult to determine if a clinical depression is present in the setting of somatic symptoms born of physical deterioration. Common discriminators pointing toward depression include the presence of shame and guilt, the harbingers of depression and rarely present in those with medical illness uncomplicated by depression. Although the medically ill are often unable to participate in previously enjoyed activities, the desire to do so if feeling well is maintained. They may withdraw attention to only their most personally meaningful activities.⁴

A clinical condition called demoralization syndrome in some terminally ill patients, most notably those with AIDS, has also been described in the palliative medicine literature. It includes prominent symptoms of existential distress, such as meaninglessness or hopelessness, a sense of pessimism or helplessness with an associated lack of motivation to try different means of coping, and a sense of alienation or social isolation. Generally those with demoralization syndrome maintain their capacity to enjoy the here and now, but experience the demoralization when projecting ahead to the future.⁵

Obviously, some of these symptoms can resemble those found in schizophrenia. In the terminally ill patient who also suffers from schizophrenia and thus already experiences negative symptoms, including avolition at baseline, it is essential that a comparison be made to what their level of functioning was prior to the onset of the medical illness before making the diagnosis of demoralization syndrome. This syndrome, if attended to in the course of psychotherapy, is likely best categorized as a DSM IV V code, religious or spiritual problem.⁶

Case Example, continued

Mr. P was severely dyspneic and walked very slowly. He said it was so hard to get around that the only place he was going was the doctor's office. “And also fishing…” he said with a smile, “but then I have no energy left to do anything else.”

“Do you have any worries about how worn out you are becoming?” I asked him.

“Well if I get any tireder (sic) I won't be able to do anything. My wife has bad knees…how is she going to help me?”

“That is a concern… and it's a good thing you are thinking about that already, so you can make plans. Have you ever heard of Hospice?”

“That means you're about to die, right?”

“Actually, hospice is designed for people who might be in their last six or so months of life. What has your doctor told you about how long you have to live?”

“Well last year he told me three months, but here I still am!”

The issue of potential benefit from hospice care was discussed with Mr. P, who deferred any such decisions to his family. “I don't think they are ready for that,” he told me. With permission, his family doctor was contacted and concurred that the family would likely be very upset, but agreed to bring up the topic and explore their readiness at an upcoming appointment.

Practice Point: Suggesting Hospice Care to Patient and Family

It is not unusual for patients and physicians alike to believe that hospice is only for the final throes of life, but in fact the benefit is much more extensive than this. When initially conceived, the hospice benefit strictly applied to those in the final six months of life, and generally only provided for individuals with a cancer diagnosis. Since that time the benefit has been expanded to include other chronic illnesses with more nebulous prognoses, including dementia, for example. Once a patient is referred by his family physician as meeting criteria that indicate a likely life expectancy of six months or less, an individual can be enrolled for two 90-day periods, and then an unlimited number of 60-day periods, as long as criteria are still met.⁷ The hospice benefit includes full coverage for medical care related to the admitting diagnosis, including medication, oxygen, and other supplies, plus access to a multidisciplinary team, which includes a medical director, palliative care nurses, home-health aides, social workers, chaplains, and volunteers.⁸ Although many patients are referred in the last week or two of life, an earlier referral benefits the patient and their family as symptom control and anticipatory grief can be addressed for a longer interval. It is not unusual for patients with COPD and congestive heart failure (CHF) to actually live longer in hospice given the excellent palliative care provided.

Case Example, continued

Unfortunately, a rapidly worsening physical condition ensued, and Mr. P was medically hospitalized for worsening COPD complicated by CHF. During the hospitalization, he developed confusion and his antipsychotic medication was adjusted with eventual resolution. Mr. P and his family accepted a visit from the hospice educator. He enrolled in hospice and received equipment for home care, including a hospital bed and a nebulizer. His dyspnea and associated anxiety were treated with lorazepam.⁹

Practice Point: Relapse of Psychosis vs. Delirium in the Medically Ill Psychotic Patient

It is particularly challenging to determine the etiology of confusion in the medically ill patient with schizophrenia. Reviewing the recent history to determine rapidity of onset and changes of sensorium is critical to ruling in or out the presence of delirium. It must also be recognized that with the increased exposure to unfamiliar individuals and unfamiliar routine, an unavoidable consequence of hospitalization, paranoia is likely to blossom. A few important distinctions between the presentation of psychosis and delirium are helpful to keep in mind. Delusions born of delirium are more likely to be of sudden onset, very vivid, relatively disorganized, and often accompanied by visual hallucinations or misperceptions.¹⁰ The psychiatrist's input can be invaluable to the hospice team, providing both reassurance and specific information about such distinctions as well as about the uses of specific medications, such as benzodiazepines and antipsychotics, with which we are well versed. In addition, if the patient is becoming delirious, we may be able to alert the medical team so that modifications in the medical regimen or pain management protocol can be made, if feasible, to improve quality of life.

Case example, continued

I called the patient at home, and he and his wife agreed to a home visit. Mr. P was sitting on a hospital bed in the corner of the living room, with long coils of oxygen tubing at his feet. He was able to speak in brief phrases but was clearly weak and weary. His wife spoke about how frightening it was when he was “confused” in the hospital.

“I couldn't have taken him home like that,” she said.

Mr. P acknowledged his prior confusion with a chuckle. “I don't know what I was thinking.”

He now knew his surroundings and showed no evidence of “confusion” (which was actually paranoia, in his case), despite the increased attention he was receiving both from family and hospice team members.

“Are you having any more worries?” I asked him. Mr. P voiced his concern about not being able to catch his breath at all. He was worried about whether his family would get too scared for him to be at home. Would they be able to help him if he had even more trouble breathing? Would they be able to handle it if he were to suddenly “pass away” right there in the living room? He himself admitted he had his own fears: Was he going to Hell? He vividly recalled that in the past he had experienced the voices of God and the devil talking to him. For him, those experiences had been very real. What will they decide about him now, in his final hour?

To the Reader: So, have we piqued your interest? Working with the psychiatric patient who is facing end of life existential and spiritual issues can be very challenging and rewarding. It will be the topic of another article to appear in a subsequent issue of this journal.