Wednesday, April 14, 2010

Dying Wishes at Lunch

Larry surprises me during a visit to my pulmonary clinic in 1983. “Doc, I want to take you out to lunch. There’s something I want to discuss with you.”

I am a little nervous about the invitation coming from my patient, because he is a super salesman, very nice but a take-charge type of guy. I’m concerned he might to try to sell me something - and in a way he is. He's a favorite of mine coming across as a bit crusty but a straight shooter.

Larry has severe COPD (Chronic Obstructive Pulmonary Disease) and is in a downward spiral. He always appears well groomed and has a piercing gaze which acquires a twinkle when he cracks one of his frequent jokes. But Larry was serious this time. He’s just been discharged from the hospital after another of several flare-ups with severe wheezing, gasping and coughing due to infection.

His waterfront home on Vashon Island where he lives alone at age 77 is becoming a prison to him: “Doc, I can’t handle the stairs, go crabbing, or even lean over to dig clams. This is the pits.”

“Larry, how about hiring someone in or moving over to Seattle to be nearer your family and medical care”

“No way, I don’t want to move and bother my sons or have some stranger in my home!”

On examining Larry, I can see the distended neck veins and the barrel shaped chest. It is apparent that the lungs were over expanded and the diaphragms flattened and moving poorly. There is a trace of swelling in his legs. The blood gases now show an elevation in his carbon dioxide. He can’t breathe sufficiently to either maintain oxygen or get rid of the CO2. Chronic respiratory failure due to chronic tobacco abuse is his long standing diagnosis. He finally kicked the habit 5 years earlier which helped some but not enough. He hates the oxygen tubes and prednisone side effects. He now has the “moon face”, bruising of the arms, muscle wasting, and weakness – all the scourge of chronic prednisone use.

A few weeks after his request I arrange to meet Larry at a restaurant nearby the hospital. After some pleasantries, Larry lets he know that he wants to talk about dying: “Look, I’ve lived a long time and what I’m doing now isn’t really living. These flare-ups are torture, I feel like a fish out of water and I don’t want to die that way. My biggest fear is suffocating to death.”

We talk about ventilators to support breathing, “No”; ICU care with aggressive support, “No”. Larry is clear; he wants to be in control. “Look Doc, all I want you to do is promise me that you’ll help me at the end”.

I continue to listen as he explained his feelings and fears. He doesn’t appear significantly depressed but I need to check. “Larry, do you feel sad or depressed?” He replied, “No, just mad as hell that I can’t get better.” Actually, I guess that Larry had very natural “situational depression” from his illness and I suggest a low dose antidepressant, but he refuses - perhaps avoiding some unpleasant medication side effects.

So we talk options for what would now be called aggressive palliative care. “Larry, look I’m not Dr. Kevorkian but there are options. Other than the meds and oxygen you are using to help breathing, the best drug at the end is morphine. This drug takes away the suffocating feeling, treats any pain, sedates you and produces euphoria.”

“Well doc, that’s what I want”. I reply, “Larry there’s a significant catch, it would likely speed up your death by several hours or even a few days. If the intent is to relieve suffering in a terminal patient, drugs like morphine are acceptable even it might hasten death.” Larry responded, “Look, I just want to die comfortably. I know I’m dying so what’s a few hours or days in my condition.”

Later I discuss this with a few of my colleagues and got mixed responses. One says, “There are situations that you just can’t jump into. This is too close to assisted suicide.” Another replies, “The patient should have the right to ask for help from suffering. After all, since you can’t cure him you are at least obligated to relieve his intolerable symptoms.” A Swedenborgian scholar friend of mine has a broad view, “Everything in the Lord’s Providence has a reason and the Lord is always trying to bend bad toward good. Your patient is suffering and you have tools to help him. I don’t think it wise to abandon him in his need. He will be transitioning from this life to the next soon. Why needless suffering?”

Larry and I make a tentative agreement to comply with his wishes at a future date when another inevitable severe flare-up would occur, but I tell Larry that he needs to discuss his wishes and hopefully get buy-in from his two sons, one an attorney and the other a veterinarian. A week later I confer with Larry and his sons who are in agreement with their dad, and then we wait.

In the dark Seattle Christmas season, my pulmonary practice always seems busiest. Pneumonias are at a peak, new lung cancers are being discovered, and the sad stories seem relentless. My anger at the tobacco companies flares. It seems like a losing battle seeing the continuing ravages of tobacco abuse. But my spirits are buoyed by a recent significant skirmish that we won. (Smoking was finally banned at my hospital in 1983. Prior to that, doctors smoked while making rounds and families smoked in patient rooms. When I was chair of the Smoking Advisory Committee of the American Lung Association of Washington, we surveyed all of the hospitals in the state and found that only a few had a policy and none had completely banned smoking. Now, of course, smoking in any public place is banned.)

At dinner two days before Christmas, I am called by the ER doctor. Larry is there. Shortly thereafter at the bedside I see that Larry looks awful, but is able to give me that piercing look and says in a rasping voice, “Remember what you promised.” So I once more review the plan and he nodded. Normally he would go to the intensive care unit, but tonight we bypass the ICU and admit him directly to medical unit with a do-not-resuscitate order.

I pull the nurses aside and explain the situation. Fortunately, they are experienced senior RN’s, a model of their profession’s caring and competency. They tell me that they had seen too many cases where CPR was used on terminal patients. “Doctor, I’m glad you don’t view death as a failure in this situation.” Bless the nurses, they were looking after me!

The morphine drip is started, with small supplemental boluses. His sons are there. Larry seems peaceful and I say prayers for him silently on the drive home. I sleep well until the phone rings. Larry passes from his world at 3:14 AM.

Comment: The ethics in Larry’s death revolve around my intent (Arch Intern Med 1996;156:1785–1786.). In 1983 when I was caring for Larry, there were no clear guidelines so I had to function from my own training and personal comfort zone. In recent years, specialty societies have published guidelines (American Journal of Respiratory and Critical Care Medicine 2008;177: 912-927) but they are still not totally clear – hence the recommendation to use ethics committees in difficult cases. The type of sedation we used for Larry has more recently been referred to as "palliative sedation," which avoids the implication that it is the sedation that is causing the patient's death.

The intent with palliative sedation differs from euthanasia or assisted suicide. Palliation is used to relieve severe suffering, whereas the intent of euthanasia is to cause the patient's death. Some have derided this “dual intent” as splitting hairs. However, there is a unanimous 1997 U.S. Supreme Court ruling noting these distinctions, which may give significant legal support for this type of sedation (13Vacco v Quill. 521 U.S. 793 (1997). The change in thinking in bioethics continues to rapidly evolve in this area (Beauchamp, The Right to Die as the Triumph of Autonomy, J Med Philosophy, Dec 1, 2006).

I was deeply touched by the letter of thanks from his two sons that came a few weeks after Larry’s death, “Dad would love to shake your hand if he could; he died the way he wanted to. Thanks and God bless.”

1 comment:

  1. Thank you from a caregiver supporting end of life of terminal cancer patient.