Living Through Wanting to Die

Devastating illnesses can bring patients to the brink of a seemingly agreeable suicide. The role of the psychiatrist can be to look coldly through the pain and determine if there is a way to save the patient's life and make it worth enduring. Then the clinician must be prepared to enact what he perceives.

In 1986, my mentor and suicidologist, Dr. Edwin Shneidman, asked me to see a patient that he had consulted on. Before I did, he told me the following:

The patient was a 64 year old man, housebound from end stage Parkinson's Disease. He had requested to be put out of his misery. He not only desired to be allowed to die, but had asked for help to accomplish the deed. He was unable to get out of bed to retrieve his stockpile of pills or his handgun.

This man previously had been a successful professional athlete. He had also been an example of fortitude and persistence to his wife of 30 years and to his four sons. He had continued as a coach, hiding the early signs of Parkinsonism from his players and children, saying he did not want to be pitied. For six years; he functioned-fairly well. But during the last two, he had deteriorated drastically.

He had exhausted most of the benefits of the anti-Parkinsonism drugs and was obtaining progressively less relief for his tremor while having increasing negative side effects - severe involuntary movements (athetosis) - from the L-dopa. His neurologist had cofirmed that the disease was indeed progressing and the L-dopa becoming less effective. But the neurologist did not feel the disease had reached an end stage, believing it might not for several more years.

After hearing a history and description of this difficult situation, I phoned the patient and his wife to arrange a house call. Then I drove the 45 minutes it took to reach their home. The weather was roasting and my air conditioner was on the fritz, so I found my anxious anticipation becoming mixed with irritation.

When I arrived, the patient had been "readied" for my visit, I discovered, by having been moved from bed. He had donned a robe and was sitting in the darkened living room. He had a wizened, almost emaciated appearance, was unshaven, and generally looked awful. In the room, I caught glimpses of early photos of this man. In them he looked vigorous.

I introduced myself and said I had come at the request of the previous doctor and of the patient's wife. The continual bob and weave of his head was as unsettling to observe as it was for him to talk through. I asked him why he thought I was there. He replied, "They probably want you to talk me out of doing away with myself. They think I'm depressed. I'm not. I'm just realistic. How do you think you'd feel, if you were a hostage to this disease?"

I didn't know what to say. I asked him, "Why did you go along with having this visit?" (Privately, I wished I were back in the safety of my office with patients who wanted to be seen.) He answered, "I have to admit, I did feel better after I saw the other doctor. He was so kind to come out to the house that, when he insisted I see you, I went along with him."

Then he proceeded to tell me much about himself - particularly how he always had been a man of action, a doer rather than a thinker. Now he could do very little, and had been reduced to a housebound invalid. "They would take it badly if I killed myself. But each day lasts forever, and I don't know how much longer I can hold on," he related in a beaten voice.

I wanted to buy more time, so I asked if he could promise me not to take any drastic action until I saw him again. The next time I wanted to see him with all his children and their spouses. We arranged this meeting for the following Sunday, giving his children from out of town time to come. As a final note, after I felt some rapport had developed, I quipped to him that if I were going to make the effort to drive this long distance in this awful heat with a bum air conditioner, I, would expect him to be shaven, groomed, and fully dressed for the family meeting.

Before this second session, I tried to establish in my mind a common goal for this family. It seemed important to each member to believe that he or she had given his or her best effort. There would be less guilt to haunt them, thereby, after he died. It was imperative to enable each person _o understand all the others' points of view. A helpful beginning technique would be to ask different persons what they believed other family members felt about this meeting. This empathogenic technique usually keeps interest of all participants high because they are allowed to hear how other family members view them.

The family meeting began with me being surrounded by a clean shaven, well groomed, street clothed patient; his wife; four sons; and four daughters-in-law.

I selected the oldest son to speak first, asking him how his father probably felt about this meeting. He replied that he felt his father went along with it to satisfy other family members, but was skeptical that anything positive would be accomplished. When asked what he had hoped his father might feel and what he feared his father may feel, he replied, "I hope my father will find a reason to live. That he will realize that he doesn't have to do anything to earn our love. I'm afraid that he'll nod, or agree to what we want now, but then he'll go back on it as soon as his suffering increases."

Other members of the family expressed similar sentiments. The youngest son's wife wept continually throughout the meeting. The patient's wife spoke very little. The patient nodded agreement frequently, but in an obligatory, insincere manner. Multiple suggestions were made as to hov the patient might usefully spend his time. On several occasions, I tried to translate different persons' points of view, to make them comprehensible to. the others. It seemed important that the patient know he was loved but, yes, he was a burden. He was not imagining that. It was emphasized that he himself was not the burden, rather it was his illness. As he felt helpless against-his illness, his family felt helpless against his despair.

Furthermore, it seemed clear that the family wanted to believe him, but distrusted him. They believed that he still would end his life, if he had the chance. When confronted with this, he promised not to attempt to end his life, and to give a psychological approach to his suffering a chance.

The meeting lasted about 90 minutes. By its end, the family felt a good deal more unified, as all of them had expressed their personal fears and hopes. I left the family with two books to continue to help them understand each other.

I gave The Diary of Anne Frank to the patient. Like Anne Frank, he was in an occupied country, occupied by his unwelcome disease. I emphasized that, just as she was forced to create a new world for herself, behind her bookcase in Amsterdam, he was now challenged to learn a new way to enjoy and appreciate life, now that physical mobility no longer was available to him.

I gave Death Be Not Proud by John Gunther to the eldest son. I told him that this book might help him appreciate the struggle to keep hope alive and despair at bay. Gunther had depicted this so poignantly, telling of his son who would die of a brain tumor shortly after he tenaciously completed high school. The book also might help him and other family members to balance savior-like zeal with a realistic goal of reducing suffering.

The days passed, the disease progressed. The patient accepted a trial of antidepressants, but developed urinary retention and a urinary tract infection. He was hospitalized, and felt even more demoralized and suicidal.

The eleventh hour had been reached, and I arranged another family meeting. At it, every family member agreed to allow the patient to take his life. In that meeting, I suggested that until shock therapy (ECT) was tried, not all reasonable options had been exhausted.

They were aghast at the suggestion of such a "primitive" 'method of therapy. But I told the family my belief that in years to come ECT would probably be shown to be a very effective treatment in properly selected patients. Since it was now available, I argued that the controversy prominent in the media should not prohibit its use. It would be a shame, I concluded, to see it confirmed as a therapeutic modality, as I believed it would be, and to be concurrently haunted by the knowledge that it had not been tried before their loved one was allowed to commit suicide. The family agreed to allow it to be tried. In a unified confrontation with the patient, they "insisted" he give it a try, if not for himself, then for them.

Before the therapy was tried, I consulted with other psychiatrists, who agreed that ECT was indicated. Then a course of inpatient ECT was given. I was pleased and vindicated that there was a striking remission of not only the patient's depression, but of many of his Parkinsonism symptoms as well.

Maintenance ECT since, at a frequency of one treatment per month, has kept the patient's functioning at an optimum level. At present, the patient and his wife continue outpatient psychotherapy.

And after that they came to my place.

EPILOGUE: That patient went on to have many additional years of reasonably good quality life (they even sent me a picture of him horse back riding) before he finally died seven years ago. It left me with two enduring lessons. First, to project yourself into someone's suffering and think I'd feel and want to do the same thing is to miss out on a treatable illness. Second, to extend life without giving people a reason to live is at the very least short sighted and at worst is against the Hippocratic Oath to "first, do no harm."

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Comments

[Mark Goulston, M.D. - Huffpost Blogger]

As I said above there are millions of people with untreated depression that wish and can make a case of being dead, but with treatment many of those will reach a place where they are glad to be alive. My concern with the case above was that all the available treatments would not have been tried and then the family would discover one subsequently that they could have tried but didn't.

Thank you for your thoughts.

[cybermome1207]

Dr Goulston..

a few thoughts regarding your post. July 29th it will be two years that my bi -polar husband of 28 years killed himself.

At the time of his suicide, he was on 8 different medications and being seen by a Dr at no charge. We were paying over $600 a month for insurance and could not find a shrink that would take this insurance. I'll keep this out of the equation, but we need real health care reform that includes therapy AND more than 10 minute med checks. Depression is a complicated disease and too many Docs want to push meds. I'm not against meds or even ECT I'm just against a once size fits all approach to a disease as complicated and yes insidious as bi polar disorder. Therapy...real therapy can help. In the end..I believe that if my husband had dealt with his serious issues regarding his family of origin along with meds, he might he been helped. But he couldn't and in the end suicide was his only option.

[parkins1]

Dr Goulston-
I have no doubt that you mean well, but back off. It is my body and my choice and there are worse things than dying. I think that at times, psychiatrists and others project their own fear of death out into the world and allow that to guide them. If you want to help, then do something to make the life worth living, not just bearable.

As a person with Parkinson's (PWP) for 17 years, I understand your patient better than you. And while I am nowhere near giving up, it is reassuring to have the option. In case of emergency, break glass... If you want to really help, start asking why PD is still being treated with drugs from over 40 years ago and actual cures are sidetracked or even suppressed. Before you put it down as paranoia, google "Amgen" and "GDNF". Treating my symptoms generates $10,000 per year from drug sales. Curing me would wipe that out. The math isn't difficult.

[Mark Goulston, M.D. - Huffpost Blogger]

Thank you for taking the time and thought to respond. I wasn't trying to prolong his suffering, I was just wanting to make sure that treatments that were available that might relieve his suffering and restore quality of life be tried. If they failed, I was not opposed to the family and the patient going forth with their plan. I agree with the credo of the City of Hope: "There is no profit in curing the body if in the process we destroy the soul."

[cochrankat]

Death, schmeath. I am a Parkinson's patient and I am focusing, not on right to die issues (and I strongly agree that everyone has the right to make that choice), but on the fact that ECT showed efficacy in alleviating Parkinson's symptoms and restoring quaiity of life and was safely done once a month...and this was NINETEEN EIGHTY SIX! Dr. Goulston, where have you been all those years? Where are the followup studies to confirm the safety and efficacy of ECT for Parkinson's patients? it's been in the news lately that electromagnetic stimulation of the spine is showing therapeutic potential for movement disorders. Given your experience with this patient, it probably isn't news to you.

Why, why would you have sat on this for all this time?

I'm stunned...­mystified.­..and ready to run, no, make that shuffle, to the nearest ECT Hut for my first jolt.

Any reason why I shouldn’t?

[Mark Goulston, M.D. - Huffpost Blogger]

I would carefully look into it and research it the way this family did and see if there are other treatments that have been developed in the past twenty years. Sorry to hear about your illness. good luck whatever you do.

[PlaceboStudman]

What caught my attention is the fact that this story is nearly 20 years old, 1986. In today's world there is no longer shame or loss of dignity in the decision to take one's own life voluntarily, when faced with severe irreversable disease. Even the best treatments only put off the inevitable. Is it not more merciful to allow the patient to embrace the control of his/her own life and death? As a strong advocate for Death with dignity options in health care, I find the emotional manipulation by the family incredibly highly offensive. We live in a world where there are simply too many people who are perfectly comfortable allowing thousands if not millions of Terri Schiavos to exist and torture their families and friends by forcing them to abdicate control of their own life, or the life of a loved one for a "higher purpose" that no one can really define outside of religion

[Mark Goulston, M.D. - Huffpost Blogger]

I understand your thoughts, but one of the problems for the millions of people with untreated depression is that some of the symptoms that go away are the hopelessness they feel. I don't believe in keeping people alive just to please their family or for the sake of keeping them alive. I believe in fact that it has been a failure if a person doesn't get to the place where they are glad to be alive.

[Skylarstar]

Psychiatrists can be incredibly arrogrant. This man had the right to make his own decision about whether to live or die. You can never truly project yourself into another person's suffering. You have no true idea what this man was enduring.

[truindependent]

Continued from above...

And of course, I'll ask the standard question that everyone asks - if you see a dog in the road who has been hit by a car and is obviously in excrutiating pain, do you try to get him to 'overcome' his pain? I think not - you put him out of his horrible misery and let him move onto whatever is next, if anything. You don't believe humans deserve the same opportunity, especially since they can actually state their preference?

I am a 62 year old man, in decent health, who enjoys being alive. I have specifically told my wife that I DO NOT want to be anything like this man and, I don't care how she does it, if it happens to me, please, please, please put me out of my misery. Now, if I change my mind before then, or as I slowly deteriorate, and decide I don't want this to happen, I can call on you to make me feel better mentally and try to 'soldier on' in spite of my difficulties. Until I make that decsion, it is truly none of your business.

[truindependent]

First of all, let me say I admire you for your efforts. And I had no idea there was something called a 'suicidologist'. However, if the man truly wanted to die, why wouldn't you let him? If he wanted to get a hair transplant, and you don't believe in hair transplants, would you have worked so hard to get him to change his mind?

A person's decision with regard to themselves is his or hers to make, no matter your or anyone else's opinion on the matter. Is it because you and others truly believe you have all the answers for everyone, or do you think you're God, you believe in the 'sanctity of life', whatever that means, or is it because assisted suicide is unlawful, and you nor anyone else could stand to hand him the gun?

Or did you do it for the sake of the living who wanted to postpone his death for their own selfishness in not wanting to lose his companionship and wanted to postpone their inevitable pain of mourning?

Continued below... (I exceeded the word limit!!!)...