The law on assisted suicide is incoherent for both those with a terminal illness and their loved ones

The Commission on Assisted Dying, which I chair, on Thursday identifies a possible legal framework for the issue. It is a very British approach to legal change – limited, and subject to stringent safeguards – but a significant step that we believe would make the process of dying more humane, both for people who want some degree of control in their final illness, and their loved ones who are left behind.

Our framework proposes that a person who has an illness from which two doctors consider he or she will die within 12 months, could receive assistance from their doctor to end their life if certain stringent safeguards were met, without the assister committing a crime. The doctors must be satisfied that: the person is aware of all the available social and medical help; the person is making the decision voluntarily, and with full capacity; no other person nor a sense of being a burden is unduly pressuring the person to commit suicide; there is no treatable mental condition that might alleviate the suicidal wish; and the process of the suicide will be carried out as humanely and as carefully as possible.

We heard much evidence of excellent end-of-life care in some parts of the country, but how bad the care of the elderly and the terminally ill can be in other areas. Part of our conclusions is that, in parallel with any law change, there should be improvements to ensure that high-quality end-of-life care is available to everyone.

However we also concluded on the evidence we heard that no matter how good end-of-life care may be there is always likely to be a small cohort of people who will experience unbearable suffering in the final phase of their illness, often due to increasing loss of function and independence. The framework that we propose would improve the last period of a small number of people’s lives by giving them control over when, where and how they die, while protecting those who might not have the mental capacity to make such a decision, or who might be at risk of social pressure to end their life. Following a year of the most detailed investigation, the commission concluded first that the current law was incoherent. As it stands, assisted suicide is punishable by up to 14 years’ imprisonment. Each suspected case is investigated by the police. It is then brought before the director for public prosecutions who decides whether the assister was motivated by compassion or not, in accordance with his guidelines. In the 31 cases reviewed by the DPP since February 2010, not one has been prosecuted.

The assisters are treated as criminal suspects, and while that provides them with some protections, it also means they have the cloud of criminal prosecution hanging over them. We heard from police officers what the effect on suspects such as the parents of Daniel James was. We heard from the husband of someone whose wife committed suicide – Chris Broad, the former England cricketer – of the lengths that his wife went to die alone in order to ensure that he could not be prosecuted.

We heard from those who want the option of an assisted suicide, such as Debbie Purdy, about their fears of loved ones being prosecuted after they have gone, and how that has driven people to take their lives earlier than they would have wanted, when still able to travel alone to places like the Dignitas clinic in Switzerland.

We also heard legitimate fears about the effect a change in the law might have. We heard from disabled people who were understandably worried that allowing the option of an assisted suicide to those who have significant impairments but are not terminally ill could devalue the worth of disabled people’s lives. In the light of that we do not consider it would be right to extend the right of an assisted suicide to someone who was not terminally ill.

We heard evidence from those who feared that the option of an assisted suicide would lead to terminally ill people feeling under pressure to exercise that right, for example from relatives or through their fear of being a burden. We considered very carefully whether the right course was simply to leave the law as it is, and allow the current fear of prosecution to be the safeguard. But we judged the better solution would be to allow an assisted suicide where stringent safeguards were satisfied. That way there would be both protection for vulnerable people, and prevention of the unnecessary pain that the current law on assisted suicide imposes on dying people and their families.

To make sure that this process is carried out effectively, efficiently and without abuse, we recommend a national monitoring commission with regulatory oversight and powers of investigation. This body would receive notifications of each death, followed by the doctor’s report including records to demonstrate that each safeguard had been adhered to.

The commission’s framework would allow people in the last 12 months of life to choose the point at which suffering becomes unbearable. It could prevent them dying in a hospital ward, rather than surrounded by friends or family. It could spare them from a botched suicide attempt. It could allow them to live their life right up to the end, rather than try to take it earlier than they would want but while they still can. And for those to whom the option is available, it would prevent them from making the difficult trip to Switzerland to die away from their loved ones in the Dignitas clinic.

This framework would also help to open up the conversation about how we die in this country. By introducing a humane and supported way for people to end their lives, while continuing to improve end-of-life care, we can help ensure that every person is able to die in the way that is best for them.

WASHINGTON — A national hospice company improperly cycled patients through nursing homes and hospices with a goal of making as much profit as possible from Medicare, according to a whistleblower lawsuit announced this week.

The author has poignant anguish.  But the sentiments require some unpacking.

Clinicians have many motives for offering/providing life-prolonging interventions.  While fear of being sued may explain some of what is going on, I doubt malpractice-ophobia plays a large role.  Some doctors believe they should continue mechanical ventilation, especially expensive nutritional support (like TPN), medications to sustain circulation, chemotherapy and so on.  That approach may stem from their own religious or philosophical perspective or from an institutional or professional culture of “fighting to the bitter end.” Other physicians do not bring up palliative care options because of dislike of or inadequate skill in having long, emotional, perhaps uncomfortable conversations with patients and families.  Others may make assumptions, correct or not, about the patient’s or family’s beliefs about life prolongation.  In pediatrics, overtreatment stems, in part, from uncritical attempts to continue to push the envelope and improve survival, given extraordinary successes in neonatology, pediatric oncology, and other subspecialties over the last half century.  It’s complicated and surely does not reduce to fears of litigation.

Families too have many motivations for insisting on continued efforts to sustain life.  For families whose child has had sudden catastrophic threat to life, the protective psychological defense mechanism of denial plays a role.  Families who have become veterans of sophisticated tertiary care treatments—which often have substantial initial success—cannot help but absorb the culture of triumphalism that emanates from staff and other families.  Recall that more than 70% of children with cancer are “cured” of their disease.  Other families believe, correctly or not, their religious tradition requires them not to “give up.”  Remember also that 15-20% of Americans, according to polls, believe in continuing to sustain life regardless of whether the patient has cognitive function or signs of a good “quality of life.”  The Schiavo drama demonstrated that amply.   From the perspective of vitalists—those committed to maintaining cellular function of human life—“futility” does not exist.

Socioeconomic and political considerations come into play as well.  Many in minority communities believe that physicians provide life-sustaining treatment in a differential manner: wealthier white families get no-holds-barred ICU care while poor, dark-skinned families get the message that it’s time to stop.  Unfortunately, this belief has a solid foundation.  Not only can we find good historical evidence that such discrimination has occurred, recent studies confirm that clinicians continue to make recommendations for more or less intervention based on skin color and other medically irrelevant factors.  Presumably, most discrimination like this is unconscious, but it is nevertheless real and disturbingly prevalent.  Family demands for more or longer treatment may stem from deep—and justified—mistrust that their loved one won’t get her or his fair share.

Institutional futility policies, with or without cumbersome “due process” arrangements, will not adequately address situations where patients and families do not share the clinicians’ notions, based in medical rationality, of what constitutes futility.  Nor will futility policies sufficiently deal with suspicions based upon decades, if not centuries, of racial, ethnic, religious, and other kinds of prejudice.  Clinicians must learn to address their own psychological and social baggage and then deal openly and compassionately with the different world views and fears of patients and families.

Joel Frader, MD, is Professor of Pediatrics and Professor of Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine and Division Head, Academic General Pediatrics and Primary Care, Children’s Memorial Hospital, and past-president of CECC

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Julie Goldstein MD and a team of tenacious advocates have gotten us this
far. We can change the delivery of palliative care with this bill. Please
act now.

Thank you,

Loretta
President

Governor Patrick Quinn
100 W. Randolph, 16-100
Chicago, IL. 60601

RE: IL H 3134
Amends the Department of Public Health Powers and Duties Law of the Civil
Administrative Code regarding advance directive information; provides that
the Department of Public Health shall publish the Department of Public
Health Uniform DNR Advance Directive form in Spanish in a form that meets
requirements to nationally be considered a physician orders for
life-sustaining treatment form; provides for consultation with nurses and
emergency medical systems; provides that publication may be limited to the
web.

Dear Governor Quinn,

The above referenced bill is awaiting your signature. When you sign it, all
citizens of Illinois over the age of 18 will be able to exert autonomy over
their lives in a new way: we will be able to have the secure knowledge that
our loved ones and caregivers will know our choices for medical care at the
end of life and that our medical institutions will honor them.

The new IDPH Uniform DNR Advance Directive form will be a standardized
advance directive and a secure document that is completed by a person who is
known to have a terminal illness, a chronic condition that will lead to
cessation of life, is generally frail, or lives in a nursing home. As a
Physician Order for Life Sustaining Treatment (POLST), it is signed by a
doctor after the patient has selected clearly presented treatment choices,
then entered into the patient¹s medical record, and therefore a secure
directive for future medical care.

The Illinois form is modeled after the widely respected and admired POLST
Paradigm Project that was implemented in Oregon 1995 and has now been
endorsed by twelve states, including New York and California. 24 more
stares are currently developing a POLST Paradigm program.

Illinois will be a leader in having a uniform, secure advance health care
directive program that empowers its citizens to establish their own
parameters for care at the end of life. Such a directive will protect
citizens from receiving unwanted medical treatment and allow them to receive
appropriate palliative care and experience a gentle final transition.

We hope you will sign IL H 3134 today.

Thank you,