We are seeing more terminal patients being referred to hospice

At the University Hospital in Madison Wisconsin in 1938, a patient was dying from a very painful bone cancer which had produced fractures. The young interns knew that more morphine injections were needed but they feared they might be blamed for giving a lethal dose. So a tacit agreement was reached. Every hour or so,one of them would come into the patient’s room and give a shot of morphine. This was rotated between four or five of doctors so no one really knew who gave the final dose. My father told me this story before he died. He was one of the interns – and he felt strongly that they had taken the right action in a moral sense.

In 1980, I saw a patient I’ll call Sam with a malignancy of the lining of his lungs. It was related to working around asbestos in the shipyards during World War II. The asbestos would come in bags which they dumped into barrels, added water, then applied the paste to steam pipes in the holds of ships for insulation. They were covered with asbestos dust by the end of the day – dust similar to the spray used for fire protection on the steel girders in the high rises of downtown Seattle where the white clouds of asbestos settled onto the city streets during construction. Several of Sam’s co-workers had already died of the asbestos related cancer – mesothelioma.

Surgery was unsuccessful in that all Sam’s tumor couldn’t be removed. Fluid kept building up in his chest and he was progressively short of breath to the point of gasping and not being able to lie flat. I could tap some fluid giving temporary relief and even tried to scar down the area using a talc solution without much success. Sam would come in with his wife Helen feeling more discouraged and depressed. Over time he began asking for frequent refills on his sleeping pills along with more narcotics. I felt he was likely planning to take a lethal overdose of these medications I was prescribing which, of course, was against Washington State law at the time – and continues to be against the law in 47 other states.

“Sam, are you planning to take a large dose at the end?”

“I don’t know doctor, but I want to be able to decide when things are no longer tolerable.”

Since I was a member of the hospital ethics committee, I decided to present Sam’s case to the group. These discussions are helpful and advisory. The recommendations are not the feared “Death Panels” being referred to in political debate. Ethics Committees have the benefit of broad representation: nurses, doctors, social workers, clergy, consumers, pharmacists, and many others. We had an intense and lively discussion. This was in the days before Dr. Kevorkian, before Hospice, and before any state had a “Death with Dignity” law. After much debate, the consensus of the committee was that ethically Sam had the right to self-determination and to end his life when the suffering was too great (assuming that he was mentally clear and competent). The committee acknowledged, however, that physician assisted suicide is against the law.

I saw Sam several more times, each time he was worsening. Two weeks later, I got a call that he had died at home. The death certificate was delivered to my office the next day. Cause of death assigned by me: Mesothelioma – his cancer.

I called Helen a few weeks later with my condolences and asked her if she’d be willing to come in and discuss Sam’s dying with the Ethics Committee. She rather hurriedly replied, “No way,” an answer that I kind of expected.

There are now more options are available at the time of death to help patients avoid or ameliorate severe pain or severe shortness of breath – conditions that are not at all uncommon at the end of life.

Modern hospice care is now widely available in the USA and is a covered Medicare benefit. The benefit commonly adds increased coverage of medications, equipment, nursing visits, spiritual care, etc. during the last six months of life. Some health plans offer Hospice for terminally ill patients under 65 as well. Hospice, for unclear reasons tends to be underutilized with patients being referred there often only a few days before death.

Although Hospice is constantly improving, three states (Oregon, Washington, and Montana) allow “Death with Dignity” – basically allowing physicians to prescribe lethal doses of a barbiturate in specific situations. The Wall Street Journal, discusses Washington’s I-1000 Initiative which passed with a 59% voter approval rate in November of 2008.

Oregon’s similar “Death with Dignity Law” has been in effect for over a decade. In an Oregon State report, “During 2009, 95 prescriptions for lethal medications were written under the provisions of the DWDA compared to 88 during 2008. Of these, 53 patients took the medications, 30 died of their underlying illness, and 12 were alive at the end of 2009. In addition, six patients with earlier prescriptions died from taking the medications, resulting in a total of 59 DWDA deaths during 2009. This corresponds to an estimated 19.3 DWDA deaths per 10,000 total deaths.” So for every 500 natural deaths, there is one DWD death.

So far, many of the worrisome concerns about the law have not come to pass: such as abuse of the weakened elderly; abuse of the handicapped or mentally ill; expanding the criteria for qualifying patients; substituted judgment; etc. I still do read and hear worrisome comments though like the following: “It’s too bad we can’t just give the medication through his feeding tube; he’s a vegetable costing society and his family so much of their resources; she can’t speak for herself now, but I know she would want to receive the drugs – just like her beloved dog did; although he does have more than six months to live he should have the right to go anytime he wants.”

There are likely going to be organized attempts to broaden the criteria for assisted suicide (DWD) in coming years by election initiatives and court rulings. the issue is far from settled. It is unknown whether the ratio of 1 DWD death to 500 natural deaths will remain stable.

There’s a controversial organization called Dignitas in Switzerland promoting Suicide Tourism, see March 2010 Atlantic Monthly. Also Frontline, a documentary show on PBS has a well done video of an American traveling to Switzerland specifically to commit suicide. Switzerland allows non-residents to receive physician assisted suicide. Other European countries like the Netherlands, Belgium and Luxembourg allow physician assisted suicide only for residents.

The unfortunate patient, Craig Ewert, had severe ALS, was losing muscle function and needed the support of a breathing machine. He wanted to be in control and did not want to suffer at the end. It was clear he would prefer to live but saw no hope for the future.

In my practice in pulmonary and critical care medicine I cared for many patients with ALS at the end. With the aid of hospice and aggressive palliative care with the intent of relieving pain and terrible shortness of breath, a patient like Mr. Ewert can receive care at home with the loved ones nearby. This type of death does not apply the “Death With Dignity” Washington law of a self-administered intentional lethal drug. It would mean giving small doses of morphine and/or midazolam (a sedative), removing the ventilator support, and giving enough medication to relieve symptoms. The intent is to relieve suffering and to adhere to the patient’s wishes. Yes, the life ends but it is not a suicide, the loved ones are nearby, and the patient’s wishes are met.

With the advent of care like this, we are seeing more terminal patients being referred to hospice, fewer hospital deaths, and more comfort for the patient and loved ones.

The DWD law in Washington, Oregon, and Montana does remain an option. But with good hospice care and good communication, the use of terminal lethal overdoses will remain at a minimum. The law has actually made the medical and nursing profession step up and provide more knowledge, more research, and more care focused on the end of life.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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  • http://twitter.com/ANONYMOUSLULZ1 muhammad

    i gave my mother and grandfather morphine overdoeses to end their suffering and know of many families who do this,this is why they dont use hospice..its nobody’s business but the family

  • Anonymous

    I recently looked at current data for % of the population that dies in hospice and length of stay in the US, Canada, and the U.K. The modern hospice movement started in the late sixties for all three (come controversy on exact dates). In 40 years there still has been some increase in the % of the population that dies in hospice and their length of stay-but it’s minimal.

    Each country has different national hospice models, financial arrangements, medical practices, and primary place of hospice service–yet differences in outcome (% dying in hospice and length of stay) are insignificant.

    I think it’s clear that just educating the public and physicians about the value of hospice is not enough.

  • Anonymous

    Thank you for your sensitive, thorough, and perceptive article. As a hospice and palliative care nurse, nurse manager, and later program director, I’ve witnessed and participated in many healing experiences among the hundreds of patients and families I’ve served. The AIDS pandemic through the mid-1990s taught me precious lessons about the human spirit: most important that healing is not only possible, but necessary, in the face of our inevitable end. I use the term “healing” quite purposefully. For I mean healing in the sense of restoring one to wholeness — not only to physical comfort and spiritual peace but to a sense of life completion and even transcendence. The dynamic interdisciplinary care that is the truly revolutionary aspect of good hospice and palliative care needs to cross that bright line which separates us from our humanity, and our need for wholeness. “Brink of death” hospice referrals are exceptionally difficult and needlessly draining for all concerned. The full hospice team rarely has a chance to work with patient and family — and each other — in these situations. And while the bereavement care for surviving family members that is also part of the Medicare hospice benefit can provide valuable structure and comfort for the bereft,
    we are left with a sense of sadness for what could have been!

  • Anonymous

    Isn’t the example of hospice that bleeds the medicare system the best example of the medicalization of the death process?  Wouldn’t you agree that a comfortable environment for the dying patient would be the familiar environment of their home?  If hospice reflects the inability of our society to maintain family ties, then isn’t it time to adopt a new term instead of longevity?

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