My Oral Submission to the New Zealand Health Committee Regarding Physician-assisted Suicide on March 5, 2017

As a nurse and legal consultant in the USA with 47 years of experience in the most challenging areas of medicine such as critical care, oncology, burn unit and hospice, I have seen many of the most challenging cases in medicine. I also have professional and personal experience with suicidal people, including my own 30 year old daughter Marie who died using an assisted suicide technique that she found searching the internet and after a 16 year struggle with drug addiction. I have worked with many suicidal people, including some with terminal illness. To my knowledge, my daughter was the only one lost to suicide.

I have previously submitted written testimony about physician-assisted suicide and I would like to follow up with two crucial issues that I feel must be addressed.

First I will discuss how physician-assisted suicide empowers doctors, not patients. Second, I’ll share a nurse’s perspective.

1. Physician-assisted suicide empowers doctors, not patients.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards.

However in physician-assisted suicide, unlike any other medical intervention, any licensed doctor of any experience or specialty is granted immunity from “civil or criminal liability or professional disciplinary action for participating in good faith compliance “with an assisted suicide law[1].  The doctor or doctors involved are the ones to decide whether or not the patient is eligible, not the patient.

All the doctor is required to do is fill out a prescription and state forms. The usual standards for caring for a suicidal person including  intensive management[2]  are changed in physician-assisted suicide to “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.”[3] (Emphasis added). Not surprisingly, only 3.8% of people using physician-assisted suicide in Oregon were referred for psychiatric evaluation in 2016[4].

This is dangerous medical discrimination in treatment standards for suicidal people.

In addition, since the doctor is not required to be present or examine the patient after death, any complications or other problems must be self-reported by the doctor to the state. Even the death certificate must be falsified to report the death as from natural causes rather than the lethal overdose.[5]  This violates the standards set by the Centers for Disease Control which require accuracy because, among other issues, “The death certificate is the source for State and national mortality and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.”[6]

The  immunity protections and the secrecy of even the minimal self-reporting standards in US assisted suicide laws eliminates the possibility of future potential lawsuits or prosecutions and keeps the myth of “no problems, no abuses” alive.

2. A Nurse’s Perspective

The dangers of the legalization of physician-assisted suicide are especially acute for us nurses. Unlike doctors, we nurses cannot refuse to care for a patient in a situation like assisted suicide unless another willing nurse can be found which can be impossible. If we do refuse, that is considered abandonment and cause for discipline and even termination. And we are necessarily involved when the assisted suicide act occurs in home health, hospice or health care facility even though the prescribing doctor is not required to be there.

And these deaths are not guaranteed quick, painless or even possible in some circumstances. As a new December 21, 2016 Kaiser Health News article revealed, doctors are trying new drugs because the old drugs are becoming too expensive and taking too long to work. Unfortunately, some new alternative drugs have “turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain”.[7]

Like most nurses, I have worked over the years with a variety of doctors who are at various points on the spectrum on competency and integrity.

Years ago, I was threatened with termination after I refused to increase a morphine drip “until he stops breathing” on a man who would not stop breathing after his ventilator was removed and no other nurse was available to take over the patient. The patient was presumed to have had a stroke when he did not wake up from sedation after 24 hours. I reported the situation up the chain of command at my hospital but no one supported me. I loved my profession and at that time, I was the sole support of three young children but I knew that nothing was worth betraying the trust of my patients.

I escaped termination that time but I refused to back down. Soon after, every nurse on a medical division of nurses refused to give an overdose to a patient and told the doctor that he would have to give it himself. The doctor cancelled the order.

Legalizing physician-assisted suicide can force nurses like us to leave healthcare, leaving no reliable safe haven for people who don’t want to end their lives.

Does anyone really want to entrust our healthcare system just to people who are comfortable with ending lives? I don’t.

FOOTNOTES

[1] “Oregon Revised Statute. 127.885s.01. Online at: https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx

2 “Evaluation and Treatment of the Suicidal Patient” . American Family Physician. Online at http://www.aafp.org/afp/2012/0315/p602.html

3 “Evaluation and Treatment of the Suicidal Patient” .American Family Physician. Online at http://www.aafp.org/afp/2012/0315/p602.html

4 “Oregon Death with Dignity Act Date Summary” .Online at https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf

5 : “Washington state “Death with Dignity Act”. Online at http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct/DeathCertificateInstructions

6 CDC Medical Examiners’ and Coroners’ Handbook on Death Registration and Fetal Death Reporting”. CDC. Online at https://www.cdc.gov/nchs/data/misc/hb_me.pdf

7 “Docs  In Northwest Tweak Aid-In-Dying Drugs To Prevent Prolonged Deaths” by JoNel Aleccia. Kaiser Health News. February 21, 2017. Online at http://khn.org/news/docs-in-northwest-tweak-aid-in-dying-drugs-to-prevent-prolonged-deaths/

Urgent: Will Congress Stop the Washington D.C. Assisted Suicide Law in Time? Write Now!

Washington D.C. Mayor Muriel Bowser  quietly signed an assisted suicide bill into law on December 19, 2016 after a majority of the city council voted for it.

Under the U.S. Constitution, the Congress has exclusive legislative authority over the District of Columbia. Congress has just 30 legislative days to review a law of the District of Columbia once it is passed by the city government. Resolutions of disapproval must be passed by both houses and be signed by the president to block a D.C. law.

In a race against time, the first step  to block the assisted suicide law was taken January 12, 2017 by Sen. James Lankford (R-Okla.) who introduced introducing a resolution in the Senate that opposes D.C.’s  “Death With Dignity Act”.

A companion resolution was introduced in the House by Rep. Brad Wenstrup (R-Ohio) and Rep. Jason Chaffetz (R-Utah) also said that he would push to block the law.

COMPASSION AND CHOICES HAS ALREADY STARTED A LETTER WRITING CAMPAIGN TO LEGALIZE ASSISTED SUICIDE IN WASHINGTON, D.C.

In a message to assisted suicide supporters, Compassion and Choices claims that “more than 2400 supporters” have “sent more than 7,000 messages to members of Congress”.  The organization also emphasizes “the importance of including your personal testimony” as “often the most effective way to change the minds of lawmakers”.

HOW TO CONTACT YOUR CONGRESSMAN OR CONGRESSWOMAN TO OPPOSE  ASSISTED SUICIDE IN WASHINGTON, D.C.

The National Right to Life Committee has a website link   to “Nullify District of Columbia Assisted Suicide Law” to contact your Senators and a separate link to contact your House representative(s). Enter your zip code in the box provided and you will be taken to a list of your congresspersons and a form you fill out to send an email to those representatives or senators with your comments.

HOW TO WRITE COMMENTS

Keep your comments respectful  and address the points that most move you. If you have a personal story about why you are against assisted suicide, write it as clearly and concisely as possible.

PROBLEMS WITH THE ASSISTED SUICIDE BILL

While many legislators (as well as the public) are persuaded by the “safeguards” to support assisted suicide laws, the Washington D.C. bill has many of the same problems with “safeguards” that other assisted suicide bills have. (For example, see my blogs “The slippery Slope-Tactics in the Assisted Suicide Movement” and “Pain and ‘Choice’“.)

In the D.C. assisted suicide law, such problems include:

1.The extraordinary immunity protections against civil, criminal liability or professional  disciplinary actions for doctors who participate in “good faith compliance” with the law.

2. Protection from life or annuity insurance problems due to suicide (“Neither may a qualified patient’s at of ingesting a covered medication have an effect upon a life, health, accident, insurance, or annuity policy”)

3. Minimal reporting requirements and secrecy in public records (“The Department will generate and make available to the public an annual statistical record of information collected”) Emphasis added.

4. Require mental health evaluation only for the purpose of determining if the person is mentally capable to make the decision to end his or her life. (“‘Counseling’ means one or more consultations as necessary between a state licensed psychiatrist or psychologist  and a patient for the purpose of determining that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.”)

CONCLUSION

There are many reasons to oppose legalizing assisted suicide including risk for elder abuse, discrimination against people with disabilities and/or terminal or chronic conditions, the destruction of the most basic rule of medical ethics to not kill patients or help them kill themselves, suicide contagion, etc.

Assisted suicide, legalized and approved by society, is a manifestation of despair and abandonment-not empowerment. We cannot afford to be bystanders while others like Compassion and Choices continue to demand that we all accept legalized assisted suicide as a constitutional and civil right.

Oh, Colorado!

Of course, the big news from the national voting last week was the stunning election of Donald Trump as president. But  barely mentioned by the media except for its passage was  Colorado’s Proposition 106 “End of Life Options Act initiative which won by a 65% to 35% popular vote. Now five states have formally legalized physician assisted suicide. Montana had a court ruling that state physician-assisted suicide is not “against public policy” but no law legalizing assisted suicide has been passed.

I remember going to Colorado about 20 years ago to speak against an assisted suicide bill in the state legislature. Enthusiasm was high and the assisted suicide bill was subsequently voted down in the legislature. But, as in other states including my own Missouri, the assisted suicide proponents never stopped pushing their agenda over and over again.

With their efforts often stymied in state legislatures after robust debate and testimony, well-funded groups like Compassion and Choices turn to the promotion of state initiatives. Colorado now joins Oregon and Washington State in legalizing assisted suicide by popular vote.

However, with groups like Compassion and Choices trying to normalize assisted suicide as just another valid medical decision, medical groups increasingly intimidated into neutrality and an almost entirely sympathetic mainstream media holding up Brittany Maynard as the ultimate poster child, the average person is easily persuaded to not look too closely  at the reality of assisted suicide.

For example, here is just the title of the Colorado ballot measure. There is also a much longer ballot summary and a link to the full proposed law.

“Shall there be a change to the Colorado revised statutes to permit any mentally capable adult Colorado resident who has a medical prognosis of death by terminal illness within six months to receive a prescription from a willing licensed physician for medication that can be self-administered to bring about death; and in connection therewith, requiring two licensed physicians to confirm the medical prognosis, that the terminally-ill patient has received information about other care and treatment options, and that the patient is making a voluntary and informed decision in requesting the medication; requiring evaluation by a licensed mental health professional if either physician believes the patient may not be mentally capable; granting immunity from civil and criminal liability and professional discipline to any person who in good faith assists in providing access to or is present when a patient self-administers the medication; and establishing criminal penalties for persons who knowingly violate statutes relating to the request for the medication?”

But what might have happened if this alternative language was used?

Should Colorado change the Colorado revised statues to permit a licensed doctor of any specialty in conjunction with a similar doctor to write a prescription for a lethal overdose to cause death for any adult resident that the doctors expect to die within 6 months; require mental health evaluation only for the purpose of determining if the person is mentally capable to make the decision to end his or her life; grant immunity for the doctors and others from civil or criminal penalty as long as they claim “good faith” intentions; require that the death certificate falsely state the cause of death as a natural medical condition instead of the lethal overdose; prohibit life insurance policies from being affected by a request for a legal lethal overdose and prohibit  public information about such lethal overdoses except a yearly statistical report as reported by the doctors involved? (Emphasis added)

Of course, we will never know.

But when we allow medical/legal protections and standards to be suspended for some suicidal people considered expendable based on an estimated prognosis and personal fear of even potential pain and/or dependence,  we will inevitably see the pool of potential victims of medical termination expand and lethal injections accepted, as is already  happening in Canada, the Netherlands, Belgium and Switzerland.

Just as bad, we will also be creating a class of medical serial terminators immune from any real oversight and accountability while penalizing ethical health care providers who refuse to participate or refer.

Neutrality Kills

In 1994, Oregon became the first state to pass a physician-assisted suicide law. This came after the Oregon Medical Association changed its position from opposition to neutrality. 21 years later and after multiple failed attempts, the California state legislature approved the latest physician-assisted suicide law after the California Medical Association changed its opposition to neutrality.

The message sent-and received- was that if doctors themselves don’t strongly oppose physician-assisted suicide laws, why should the public?

Now the American Medical Association is set to reconsider changing its traditional opposition to assisted suicide to neutrality. This would be another, even more far-reaching disaster in terms of national impact.

For years, the euthanasia/assisted suicide activists of Compassion & Choices have successfully lobbied groups like the California Medical Association, the American Public Health Association, The American College of Legal Medicine, American Medical Student Association and American Medical Women’s Association and The American Academy of Hospice and Palliative Medicine to support legalized physician-assisted suicide or at least take a “neutral” position.

As a former home health and hospice nurse, I am particularly outraged that the latest organization to crumble to Compassion & Choices is the Visiting Nurses Associations of America.

According to its website, Compassion & Choices says that the VNNA had Compassion & Choices as part of the their Public Policy Leadership Conference “where they discussed their federal agenda for 2016 and the important role that members of the VNAA play in end-of-life care.”

With millions of dollars from donors to advance its agenda, a supportive media that ignores dangerous facts, popular ethicists who change positions with the polls and a legal system that has helped to undermine protections for the medically vulnerable, it may seem that Compassion & Choices is getting closer to achieving its goal of forcing doctors and nurses to supply medically assisted death on demand.

For example, a 2014 survey of over 21,000 American and European doctors responding to an ethics survey conducted by Medscape (a password-protected website for medical professionals) showed that-for the first time-a majority of doctors polled supported assisted suicide.

However, here are a few ways any of us can help turn around this dire situation:

 

  •  Educate yourself on the facts and consider joining others to publicly oppose medically assisted suicide/euthanasia in our courts, legislatures and media outlets.
  • Demand that suicide prevention and treatment must be made available to all, not just the young and physically healthy.
  • Ask your health care professionals about their position on assisted suicide/euthanasia and support only health care providers who will not assist suicide or refer for it.
  • Discover and reach out to at risk individuals and their families who may be in your neighborhood or church. Loneliness and isolation can be debilitating.
  • Consider volunteering at a local nursing home or facility. Some churches have even started programs to encourage church members to visit one hour, once a week with one patient.

None of us can afford to be neutral- or silent-when it comes to this life or death issue.

Miracle Baby Comes Home for Christmas

Francesca and Lee Moore-Williams held their beautiful 18 month old daughter Bella’s hand as her ventilator was turned off and they waited for her death. But just 30 minutes later, Bella awoke  “kicking and screaming” according to the UK’s Mirror newspaper article “Miracle baby whose life support was turned off home for Christmas”. Five months later, she is scheduled to come home this Christmas.

Bella’s health became a concern in April when clumps of her hair fell out. Three months later, she took a turn for the worse and was admitted to a hospital in critical condition. Doctors told the parents that a MRI scan showed abnormalities on both sides of her brain and at some point, the decision was made to turn off the ventilator supporting her breathing.

According to the Mirror article:

She was later diagnosed with the genetic disorder Biotinidase deficiency, which is so rare it affects just one in every 60,000 births.

Sufferers of the condition do not produce enough biotin – a vitamin which is essential for healthy cell growth.

The deficiency can be fatal if left untreated but will now be managed safely with tablets.

And today:

Bella, of Clacton-on-Sea, Essex, who turns two in January, is now learning to walk and talk and her hair is growing back.

Experts say she is around eight months behind other children her age but she is expected to catch up.

Francesca said: “She’s at nursery and to look at her you wouldn’t think she’s been through what she has.

Perhaps this Christmas “miracle” also holds a message about the need for hope and humility for those of us in the medical professions.

Merry Christmas and Happy Holidays to all!

 

 

LIVING WITH “LIVING WILLS”

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.

I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).

I wrote a 2001 article “Of Living Wills and Butterfly Ballots”   because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.

Can “living wills” be hazardous to your health?

Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health”  and “Clearing Up Confusion on Advance Directives”. The last article even warns

“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.

When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.

SHOULD I EVEN HAVE A “LIVING WILL”?

When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.

I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.

There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.

Some Points to Consider before signing a “living will” style document

Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.

1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.

What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.

2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.

I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.

3. Designate one person you trust to make your medical decisions with a backup person or persons.

Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.

4. Consider not checking off particular treatments or conditions to be automatically refused.

Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.

5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”

I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation  but the result was hastening or causing death by dehydration and/or suppression of breathing.

Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.

Conclusion

There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.

Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.

The process of coming to terms with  death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.

Welcome!

Welcome to my blog!

I hope you will find it worthwhile and enlightening. These are my own personal observations and I encourage you to share yours.

Links to sources are underlined. Just click to see the referenced citation.

I also have an archive of older articles, etc. from Voices magazine at my other blog “Nancy Valko, RN ALNC”.

I am glad you came!

Nancy Valko, RN ALNC