High Priority: Public Comments Needed on ANA’s New Draft Position Paper on Denying Food and Water

Although the American Nurses Association (ANA) claims it represents the over 3 million US nurses, only a tiny fraction of nurses actually belong. ANA does not give out the actual number of members. I used to belong both my state nursing organization as well as the ANA to try to uphold good nursing ethics and conscience rights for nurses. I finally gave up when my state organization would not address even the conscience rights of nurses in the Nancy Cruzan feeding tube case. I gave up on the ANA when I discovered that the ANA opposed a ban on partial birth abortion without notifying its membership. I only found this out when I watched a TV show on politics mentioning the ANA position. I called the ANA public relations department myself to protest both their position and not notifying members like me and resigned.

Yesterday, I received a call from a nurse in another state who sent me the website for public comments due by 5 pm ET 12/1/2016 about a proposed new ANA position on nutrition and hydration at the end of life.

The proposed position paper is 9 pages long and I sent the following comments with the referenced lines as requested. It would have taken me many pages to address all the issues:

Lines 18-24.  In the past, the hospice principle of never prolonging or hastening death at the end of life was paramount. Now, this has been subjugated to a legalized autonomy (even when exercised by a third party) to decide when to hasten death.

However, nurses are professionals whose integrity depends on proper respect for their conscience rights, especially when it comes to decisions about hastening death.  This concern is absent in this draft.

We do have such a provision in Missouri law that states:

Missouri Revised Statutes
Section 404.872.1

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

Line 88: There is no definition of “severe neurological conditions”.
Line 90 on “Dementia, recognized as a terminal illness associated with anorexia and cachexia”.  As a former hospice nurse and caregiver for my mother until her death as well as a volunteer for people with dementia, this is an alarming and potentially dangerous assertion. No one should have to die by dehydration and indeed many people with dementia can be spoon-fed like my mother until natural death. I have likewise seen several people begging for food or water but denied because of a decision not to place a feeding tube or spoon feed.

Lines 101-104. VSED as described is really assisted suicide and implicitly changes ANA opposition to medically assisted suicide.

Also, in a New York Times article in October titled “The VSED Exit: A Way to Speed Up Dying, Without Asking Permission”, Dr. Timothy Quill (past president of the AAPHM and the doctor arguing for the constitutionality of assisted suicide in the 1997 Vacco v Quill US Supreme Court case) was quoted as claiming that while VSED is “generally quite comfortable at the beginning”, he also states that “You want a medical partner to manage your symptoms,” because “It’s harder than you think.”

How hard?

In 2000, Quill and Dr. Ira Byock (a palliative care doctor who speaks against legalizing physician-assisted suicide while also supporting VSED and terminal sedation) wrote an article titled “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids” . The patient was a doctor who wanted to die before his symptoms became worse. He was given a morphine drip that had to be increased to total unconsciousness on day 10 because he became “confused and agitated and began having hallucinations”.

Lines 114-115 cite “Psychological, spiritual, or existential suffering, as well as physical suffering” but only say that “Symptom control is imperative” rather than oppose participation in VSED  for people who are not even terminally ill.

Lines 149-150 state that “Decisions about accepting or forgoing nutrition and hydration will be honored including those decisions about artificially delivered nutrition as well as VSED”. This blanket statement destroys the conscience rights of nurses as well as our duty to advocate for our patients’ best interests. (Emphasis added)

Ironically, the ANA’s 2010 position paper on reproductive rights (i.e. abortion) states that:

“Also,nurses have the right to refuse to participate in a particular case on ethical grounds. However, if a client’s life is in jeopardy, nurses are obligated to provide for the client’s safety and to avoid abandonment.” (Emphasis added) Apparently, the ANA is proposing that the right to refuse to participate ends when the death of the patient is deliberately intended.

CONCLUSION

Just this week, it was reported that a union for Australian nurses is backing voluntary euthanasia. The Australian Nursing and Midwifery Federation (SA branch) is even partnering with other Compassion and Choices-style groups in Australia to pass a voluntary euthanasia bill. This could well be our future here in the US if we do not respond.

As nurses and citizens, we need to fight for truly patient-safe health care by responding to groups like the ANA through comments sections like the one above (which ends December 1) and in the media. We must also support and insist on ethical health care providers for ourselves and our loved ones as well as protecting our patients. As much as we can, we can also help state and national organizations that fight against euthanasia.

Especially if you are a nurse, consider joining the National Association of Pro-Life Nurses and following our Facebook page.

Our profession, our patients and even our nation are at stake!

 

 

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.

Why Talk About Abortion?

Many years ago when I worked in home health and hospice, I cared for a very cranky, elderly woman I will call “Rose” who had rejected all the other nurses in our agency. Even her own doctor had problems with her and told me that he could not understand why she was even still alive because her end stage congestive heart failure was so severe. Part of my assignment was to measure her abdomen and legs to adjust her diuretics (water pills).

As I got to know Rose over several visits, she softened towards me and began telling me about her life. But one day, while I was measuring her abdomen, she burst into tears and told me she hated looking 9 months pregnant because of the fluid retention in her abdomen. Rose said she knew it was God punishing her for the abortion she had 60 years before!

Rose had never told anyone, not even her late husband, about the abortion she had before marrying him. She felt that baby was the boy she never had but she didn’t feel worthy to even name him. She also told me that she knew she had committed the “unforgivable sin” and was afraid to die because she justly would be sent to hell. My heart went out to this woman who was suffering so much, more emotionally than even physically.

We talked for a long time and in a later visit about God’s love, confession and forgiveness. I told her about Project Rachel, a healing ministry for women (and even men) wounded by abortion. I gave her the phone number and offered to be with her to meet a counselor or priest but she insisted that my talking with her was enough to help. I felt it wasn’t but she seemed to achieve a level of peace and she even started smiling.

Rose died suddenly and apparently in her sleep about a week later. I only had a few visits with her but I feel she finally felt ready to meet her Lord.

I have told this true story to priests and clergy who tell me that they are reluctant to speak about abortion in homilies for fear of causing further pain to a church member who may have had an abortion. I tell them that they may tragically miss the chance to tell a hurting woman like my Rose about Project Rachel. Also, by speaking about the many resources available through individual churches, local and national organizations like Birthright and the American Association of Pro-Life Obstetricians and Gynecologists, this may help another woman to choose life for her baby instead of abortion. And, of course, talking about pro-life resources may help church members get involved in volunteer work.

WHY NONE OF US SHOULD BE AFRAID TO TALK ABOUT ABORTION

There are great pro-life news outlets like Life News that email daily or weekly updates on news about all life issues. There are many positive and even amazing stories such as those about babies who defy the odds against them, grateful parents who choose life in difficult circumstances as well as important pro-life news, education and upcoming events.

I have shared many of those stories myself with friends, family and people on my email lists and this has led to many great discussions and crucial referrals.

But what I have found most effective is a sincere interest and willingness to help when encountering people struggling with an abortion decision for themselves or someone close to them. For example, a new colleague of mine was considering abortion after her obstetrician recommended abortion and listed all the birth defects that could affect her child after being exposed to a virus early in pregnancy. Getting a second opinion and the support of her coworkers gave my colleague the confidence she needed to reject abortion. She ultimately gave birth to a healthy daughter.

Why talk about abortion? Because we never know who may need to hear the truth.

Should Ethics Committees be Death Panels?

I volunteered to serve on a newly started hospital ethics committees in the 1990s. While I wanted to help analyze difficult cases and serve as a resource for hospital personnel with ethical concerns, I became increasingly alarmed when I saw cost containment and judgments based on “quality of life” brought up as decisive factors by others on the committee.

I understood more when I researched the beginnings of ethics committees.

BACKGROUND

After numerous failed attempts to legalize euthanasia, the Euthanasia Society of America invented the “living will” in 1967 as a first step in gaining public acceptance of euthanasia by promoting a so-called “right to die”. The group achieved much success by publicly promoting “living wills” as a patient rights document that would give people and/or their families  choice and control at the end of life or, especially after the 1976 Karen Quinlan case, if their quality of life was considered too poor.

Karen Quinlan’s case (where despite predictions,  she continued to live for years after her ventilator was removed) effectively extended the “right to die” to non-terminally ill people said to be in a “persistent vegetative state”, a term invented in 1972 to describe brain-injured people who were awake but assumed unaware.

The later cases of Nancy Cruzan and Terri Schiavo  further extended the “right to die” to withdrawal of feeding tubes and other basic medical care.

Eventually the Euthanasia Society of American became The Society for the Right to Die and finally evolved into Compassion and Choices and the “right to die” became “death with dignity” by lethal overdose.

ETHICS COMMITTEES

Ethics committees in hospitals began to emerge after the Quinlan case as an alternative to controversial court cases and became more prevalent in the 1980s, especially after the Baby Doe case in 1982. That case involved a newborn boy with Down Syndrome and an easily correctable defect that prevented him from eating safely. The parents refused the surgery and were upheld by a judge. An appeal was started but the baby died of starvation and dehydration before his appeal could be heard. Disability, pro-life and other groups and individuals were outraged.

Concerns about lethal medical discrimination against infants with disabilities resulted in the Baby Doe Regulations mandating maximal care to any impaired infant, unless certain exceptions are met.

However, there was much medical and legal opposition to these rules and:

“By the end of 1984,  the American Academy of Pediatrics and the American Hospital Association issued statements supporting the use of interdisciplinary ethics committees as an alternative to governmental investigation in such cases.” (Emphasis added)

AN UNEXPECTED PROBLEM

But a surprising development happened on the way to privatizing life and death decisions through ethics committees.

Some people and families resisted and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in guilt or dysfunctional family relationships.

However, these doctors and ethicists were shocked when in 1991, a court ruled in favor of the husband of Helga Wanglie when he insisted that treatment be continued for his wife despite a “persistent vegetative state” diagnosis.

That court decision was widely criticized in ethics circles and in 1999, Texas enacted a medical futility law.

THE TEXAS ADVANCE DIRECTIVES ACT

In 1999, Texas became the first state to expressly permit doctors to stop life sustaining treatment without consent after a review process by an ethics committee. According to the Texas Advance Directives Act, when care is deemed “futile” or “inappropriate” and the patient or family disagrees,  the patient or family is given 10 days to find another health facility for the patient and pay for “any costs incurred” in the transfer. “If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. “ (Emphasis added)

Thus an ethics committee becomes the equivalent of a death panel.

This kind of ethics committee overreach has now spread far beyond Texas. For example in 2002, I was involved in a similar a case in Missouri involving a brain-injured man despite the state not having a Texas-style law.  It was difficult to find another health care facility to accept the man within the 2 week deadline given by the hospital but ultimately the man not only survived but recovered after the transfer.

The Texas law is now being challenged in the case of Evelyn Kelly, individually, and on behalf of the estate of David Christopher Dunn v Harris Methodist Hospital, a case where a terminally ill, conscious man’s mother fought the ethics committee’s decision to remove his ventilator.

Although Mr. Dunn has since died, the case continues on the question of whether the Texas law is constitutional or not.

In the summary judgement motion filed, Ms. Kelly and her lawyers state that the ethics committee’s action “is an alarming delegation of power by the state law” and “is a far cry from the due process intended to protect the first liberty mentioned in Article 1, Section 19 of the Texas Constitution and that of the Fourteenth Amendment”. (Emphasis added)

Mrs. Kelly and her lawyers make a good point. How can a life and death decision be automatically delegated by law to an unregulated, unaccountable group of individuals outside the legal system?

Even worse, how can the right to live have less legal protection than the “right” to be dead?

The answers to these questions are critically important.