Month: March 2019

Lessons from the Victory against Assisted Suicide in Maryland

nancyvalko assisted suicide, Compassion & Choices, disability, education, law, medical ethics

In a dramatic end, the Maryland Senate was deadlocked in a 23-23 on their physician-assisted suicide bill when it came time for the last senator to vote on March 27, 2019.

Sen. Obie Patterson decided not to cast a vote which effectively killed the bill that needed a majority vote to pass.

Sen. Patterson told reporters that “I researched it, I talked with folks and my decision today was not to cast a vote. But I think I did my job. I did not relinquish my responsibility to thoroughly review all of the concerns I had about the bill. At the end of the day, I felt I could not cast a vote.”

This fourth attempt in Maryland to pass a physician-assisted suicide bill had just passed in the Maryland House of Delegates following “an intense and emotional debate that brought some lawmakers to tears”.

Although there was testimony on both sides with many personal stories, a Goucher College poll of people in Maryland showed 62% of those polled supported “allowing terminally ill adults to obtain medication to end their lives”. The Maryland State Medical Society that previously opposed assisted suicide bill had now changed its stance to “neutrality”.

Kim Callinan, CEO of the Compassion & Choices organization that promotes such legislation throughout the US had said that “with baby boomers beginning to reach retirement age, they are dealing with deaths of their parents and peers, causing them to rethink their views on death experiences allowing terminally ill adults to obtain medication to end their lives.”

Disability advocates were forced to wait to testify until all witnesses in favor of the bill testified, effectively blocking those advocates who had to leave.

LESSON ONE: DON’T GIVE UP EDUCATING  LEGISLATORS AND THE PUBLIC ON THE FACTS AND DANGERS OF ASSISTED SUICIDE

Although it seemed that the bill would pass in the Senate, all the efforts by disability advocates, pro-life people, medical professionals, concerned Maryland residents, etc. to write, speak and even march about the facts and dangers of physician-assisted suicide apparently had an effect.

When the bill was sent to a Senate committee to evaluate before being sent to the entire Senate for final passage, members of the committee now had reservations about the assisted suicide bill itself. Committee chairman Senator Bobby Zirkin said the bill as introduced to the committee was “flawed to its core”, even though he said he didn’t want to stand in the way of terminally ill people “who are truly, truly at the end of their life and out of treatment options.”

The senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide, and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

Kim Callinan, CEO of Compassion & Choices said “the new drastically revised version of this bill includes troubling amendments that we know from our experience in other states will make the bill nearly impossible for patients to access.”

But as I noted in my previous blog on the assisted suicide bill, the Maryland Against Physician Assisted Suicide coalition correctly noted that even with the revisions, the bill “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

After the bill died in the senate, one senator said he would sponsor yet another assisted suicide bill sometime in the future.

LESSON TWO: REVIEW THE RESULTS

As the Baltimore Sun article on the defeat of the assisted suicide bill noted:

“Some senators who voted against the bill recalled the General Assembly’s action a few years ago to abolish the death penalty — in part on the grounds that life is precious, even the life of a convicted criminal.

Sen. Michael Hough, a Frederick County Republican, said that his vote in favor of keeping the death penalty has haunted him. He pledged to himself that if he ever faced a vote like that again, “I would err on the side of life.”

Others questioned the logic of allowing doctors, who they see as people who save lives, to participate in a process that leads to death.

“There are no do-overs in this type of law,” said Sen. Bryan Simonaire… “Doctors have and will continue to make mistakes and miscalculations. They are humans. Once a life is taken, it is final.” (All emphasis added)

We may not always know what resonates with a legislator charged with representing his or her district but it is an awesome responsibility to make laws involving life or death decisions. That decision should not just be based on polls or horrific fears about death.

LESSON THREE: REACH OUT TO ALL GROUPS AND PEOPLE

None of us who oppose assisted suicide has the power, money or media support that Compassion and Choices has. But when we band together and use all our personal stories as well as the moral, legal, disability and medical perspectives against assisted suicide, we can win state by state and even educate the public nationally.

Our goal should not only be about defeating assisted suicide and upholding truly ethical healthcare but also to offer hope and support to improve the lives of all people experiencing suicidal despair, whether or not they are terminally ill.

 

 

A Surprise in Maryland, Compassion and Choices is Not Happy

nancyvalko assisted suicide, Compassion & Choices, education, end-of-life, law

Last month, I joined many other people fighting the fourth attempt in Maryland  to legalize physician-assisted suicide. At that time, the Maryland “End of Life Options” bill  was in a Maryland house committee. We all were disappointed when the bill was later passed and went to the senate committee.

But then things got interesting.

According to a 3/22/19 Baltimore Sun article “Medically assisted suicide bill advances in Maryland, but with changes that frustrate advocates” , committee chairman Senator Bobby Zirkin  said the bill as introduced to the committee was “flawed to its core”, even though he admitted he didn’t want to stand in the way of terminally ill people who wanted assisted suicide.

According to the article, the senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

The revised version now heads to the full Maryland Senate for a final vote, probably this week.

Compassion and Choices CEO Kim Callinan says  “The bill in its current form would create many needless hoops and roadblocks for dying patients and put doctors at risk for baseless lawsuits” and make assisted suicide “nearly impossible for patients to access.”

Compassion and Choices is urging the Maryland senate to pass a “more patient-friendly bill” that won’t erect “barrier after barrier for dying patients” including “a mandatory psychological evaluation, numerous additional witness requirements” and “preventing them (family members) from enjoying the precious time they have left with their loved one.”

However, the Maryland Against Physician Assisted Suicide coalition correctly notes that even with the revisions, the bill  “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

CONCLUSION

Ironically and just last year, I wrote about the impatient calls to expand medically assisted suicide from advocates like influential lawyer Thaddeus Pope argued that the some so-called “legal safeguards” like age limits, the definition of terminal illness and the ability to ingest the lethal overdose were actually “burdensome obstacles”.

Trying to educate the public and especially legislators about the dangers of legalized assisted suicide is a daunting task, especially against extremely well-funded groups like Compassion and Choices and a mostly supportive mainstream media.

But the unexpected surprise in the progression of the Maryland assisted suicide bill and the new opposition by the Connecticut Division of Criminal Justice to the death certificate falsification in that state’s proposed assisted suicide bill shows how cracks are beginning to grow in the false narrative that legalizing assisted suicide is perfectly safe and harmless to society.

 

 

 

 

Is the American Nurses Association Ready to Drop Opposition to Assisted Suicide?

nancyvalko assisted suicide, Compassion & Choices, conscience rights, law, medical ethics, nursing

In 2013, the American Nurses Association (ANA) stated this : “The American Nurses Association (ANA) prohibits nurses’ participation in assisted suicide and euthanasia because these acts are in direct violation of Code of Ethics for Nurses with Interpretive Statements (ANA, 2001).” (Emphasis added)

But now in 2019, the ANA is proposing a new position paper to change this. Not only is the ANA attempting to change its previously used term assisted suicide to “aid in dying” (the approved term of Compassion and Choices), but also the Code of Ethics itself.

The draft position paper is titled “The Nurse’s Role When a Patient Requests Aid in Dying”.  There is an online form for public comments which must be submitted before April 8, 2019. There is no requirement that you have to be a member of ANA or even a nurse to make a public comment. The ANA can also be contacted by email at customerservice@ana.org or by phone at 1-800-284-2378.

There is much in the draft position that I find shocking both as a nurse and a patient. For example, the draft position begins:

“It is the shared responsibility of professional nursing organizations to speak for nurses collectively in shaping health care and to promulgate change for the improvement of health and health care” and “(t)he nurse should remain non-judgmental when discussing end of life options with patients, who are exploring AID” (a.k.a. physician-assisted suicide). (Emphasis added)

This statement flies in the face of the way nurses have traditionally cared for patients considering suicide, whether they are terminally ill or not. Unfortunately, this follows the lead of several medical, nursing and hospice/palliative care organizations that have changed their positions on assisted suicide to “neutrality” or even support.

The ANA draft also states, “The nurse has the right to conscientiously object to being involved in the AID process” but “Nurses are obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.”  (Emphasis added)

The draft suggests that such nurses can “ensure the ongoing care of the patient considering AID by identifying nurse colleagues willing to provide care.”

This is forced cooperation and does nothing to protect nurses’ conscience rights. Such a position would impact not only current nurses but also potential future nurses who have strong ethical principles against helping patients kill themselves.  Many nurses already are worried about the impact of other ANA positions, such as the 2017 “Nutrition and Hydration at the End of Life”  which states, “People with decision-making capacity have the right to stop eating and drinking as a means of hastening death. (Emphasis added)

In a section titled Social Justice, the draft position states:

“Nurses must continually emphasize the values of respect, fairness, and caring,”(ANA, 2015a, p.35). Statutes that allow AID are not present in every state, which presents geographic inequity in terms of access. Additionally, AID medication is expensive, which presents an additional barrier to access for those who cannot afford it, even if they live in a jurisdiction or state where this option is legal. Nurses act to reduce or eliminate disparities. While this is most commonly associated with health promotion and disease prevention, the current AID landscape raises questions of fairness which require ethical reflection.” (Emphasis added)

I find it outrageous to encourage nurses to become social justice warriors  fighting for more access to assisted suicide and cheaper lethal overdoses. And one recommendation in the ANA draft position eliminates all doubt about a radical departure from the 2013 Code of Ethics prohibition of  “participation in assisted suicide”: “Nursing research is needed to provide an evidence base for AID.”

NON-JUDGMENTALISM: IS IT REALLY IN OUR PATIENTS’ BEST INTERESTS?

When I first met “Frank” (not his real name) many years ago, I was puzzled. Frank was a terminally ill man who had just been admitted to my oncology unit for control of his “unbearable pain”. However, Frank didn’t seem to be in any physical pain.

I talked privately to Frank’s wife, Joan, who tearfully confided that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan said she knew he was talking about shooting himself and even though she was horrified, she said she thought the right thing to say was: “I will support any decision you make”. However, she later panicked and called the doctor to say that Frank was having unbearable pain. The doctor agreed to admit him and ordered morphine to be given as soon as he arrived.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his lingering dying might be too hard on them both, she was stunned. This had never occurred to her. She said she loved Frank and she wanted to care for him until the end. I told her that she and her husband needed to talk.

Frank and Joan then finally had a long overdue open discussion about their sorrow and fears. I told the doctor what I discovered and when I last saw Frank and Joan later that day, they were holding hands and smiling as they left the hospital.

I learned that Frank died peacefully — and naturally — a few weeks later with his wife at his side.

I believe that this situation shows how being “non-judgmental” can itself be lethal. Unfortunately, the public as well as we healthcare professionals are being given the message that a patient’s “right to self-determination” is the most important ethical principle.

What I did with Frank and his wife was a lot like a recent UCLA project started when California legalized physician-assisted suicide. The project showed that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss.” The project also found that “only” 25% of these patients seeking assisted suicide went on to use assisted suicide.

When someone is suicidal, it should not matter whether they are terminally ill. Instead, we should treat them with the same care and concern we would give a physically healthy suicidal person.

Anything less would be discrimination and I am telling this to the ANA.

 

 

 

 

What about Ventilators and “Pulling the Plug”?

nancyvalko Alzheimer's, education, end-of-life, futility, medical ethics, ventilators/life support

When I first became a registered nurse in 1969, ICUs (intensive care units) were still new. The first one I worked was set up in the former visitors’ lounge and we learned how to read EKGs (heart tracings) by using a book.

By the early 1970s, I worked in a surgical/trauma ICU where we used sophisticated ventilators like the MA-1. We were able to get almost all our patients off ventilators by weaning, the process of gradually lowering ventilator support until the patient can breathe on his or her own.

But in 1976, I was shocked by the Karen Quinlan case that changed everything.

Karen was a 21 year old woman who suffered brain damage after apparently taking drugs at a party. She was hospitalized and placed on a ventilator. When she was thought to be in a “persistent vegetative state”, her adoptive parents asked that her ventilator be removed. The doctors disagreed and they case eventually went to the New Jersey Supreme court that allowed the removal of the ventilator on the grounds of an individual’s right to privacy.  Shortly afterward, California passed the first “living will” to refuse “life support” if or when the signer is incapacitated.

Ironically, Karen lived 10 more years because, as some ethicists criticized, she was weaned off the ventilator instead of just abruptly stopping the ventilator.

My experience with ventilators became personal in 1983 when my baby daughter Karen died on a ventilator before she could get open-heart surgery. Unfortunately, one young doctor earlier offered to take her off the ventilator to “get this over with”. I reported him to the chief of cardiology who was furious with the young doctor.

In the 1990s, I returned to working in an ICU and was shocked by the development of the “terminal wean” for some patients on ventilators. Often the families were told that there was no hope of a “meaningful” life. The terminal wean involved abruptly disconnecting the ventilator and “allowing” the patient to die. I brought up at least trying regular, gradual weaning and oxygen as we did for the other patients on ventilators but I was ignored.

After I retired from bedside nursing, I was asked to be with an elderly man on a ventilator who had had a massive stroke and the family was told that he would never have any quality of life and would die soon anyway. I tried to bring up weaning but some members of the family were adamant.

When the ventilator was stopped. I held the man’s hand and prayed while he gasped for air and turned blue. I asked the nurse to at least giving him oxygen for comfort but she ignored me. Instead, she gave frequent doses of morphine intravenously until the man’s heart finally stopped after 20 minutes.

I am still haunted by this man’s death.

INFORMED CONSENT?

The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention…”.

But most people seem to have a vague understanding of ventilators when they sign a “living will” or other advance directives and thus have very little information about this often life-saving medical intervention.

As a nurse, I found that most people-especially the elderly-tend to automatically check off ventilators without understanding that a sudden problem with breathing can come from a number of treatable conditions that don’t require long-term use of a ventilator such as  asthma, drug overdoses, pneumonia and some brain injuries.

In some circumstances such as certain spinal cord injuries and late-stage neurodegenerative diseases like amyotrophic lateral sclerosis, the ventilator is  necessary long-term to live. But even then, people like Christopher Reeve and Stephen Hawking have used portable ventilators to continue with their lives. Some people with disabilities use small ventilators only at night.

It is important to know that ventilators move air in and out of the lungs but do not cause respiration-the exchange of oxygen and carbon dioxide that occurs in lungs and body tissues. Respiration can occur only when the body’s respiratory and circulatory systems are otherwise intact. A ventilator cannot keep a corpse alive.

It’s also important to know that not all machines that assist breathing require the insertion of a tube into the windpipe. Non-invasive positive-pressure ventilation like the BiPap successfully used for my elderly friend Melissa allowed her to use a face mask to assist her breathing until antibiotics cured her pneumonia.

WEANING FROM A VENTILATOR

Many patients are easy to wean from a ventilator but some patients are more difficult.

Years ago, I cared for an elderly woman with Alzheimer’s who needed a ventilator when she developed pneumonia. She had made her son and daughter her medical decision makers in her advance directive.

However, the doctors found it very difficult to try to wean the ventilator after the woman improved. They spoke to the family about removing the ventilator and letting her die. The daughter agreed but the son was adamantly against this.

The woman was totally awake after the sedation to keep her comfortable on the ventilator was stopped. She was cooperative and made no effort to pull out the tube in her windpipe. She just smiled when asked if she wanted the ventilator stopped.

Having known of some great respiratory therapists in the past who were able to successfully wean difficult patients from ventilators, I suggested that she be transferred. She was transferred and a week later we were told that she was successfully weaned from her ventilator.

About a year later, I encountered the woman again when she was recuperating after a routine surgery. Although her Alzheimer’s disease was unchanged, she was doing well in an assisted living residence.

CONCLUSION

As a student nurse, I was as initially intimidated by ventilators as anyone else. But as I learned how to use them and saw the constant improvements not only in the technology but also in our care of patients on ventilators, I came to see ventilators as a great blessing when needed.

And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine-especially in a crisis situation. Most of my patients on ventilators recovered but some could not be saved. We were surprised and humbled when some patients with a poor prognosis recovered while others who seemed to have a better chance died unexpectedly. There are no guarantees in life or death.

That is why my husband and I wrote our advance directives that designate each other as our decision maker with the right to have all current options, risk and benefits of treatment fully explained.

We don’t want an advance directive that could be hazardous to our health!