New York Times Article, Dr. Timothy Quill Promote Physician-Assisted Suicide by Starvation and Dehydration

Physician-assisted suicide is not just about someone taking a lethal overdose of medicine prescribed by a doctor. For many years, Compassion and Choices, the former and more appropriately named Hemlock Society) has also promoted VSED (voluntary stopping of eating and drinking) as just other end of life option they insist is legal in all states, even those without an assisted suicide law.

Now in a disturbing new New York Times article  “The VSED Exit: A Way to Speed Up Dying, Without Asking Permission , columnist Paula Span (who admits that she was “also a speaker, and received an honorarium and some travel costs.”) writes about conference on VSED, “billed as the nation’s first, at Seattle University School of Law which drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff.” In her article, Ms. Span acknowledges that VSED “causes death by dehydration, usually within seven to 14 days.” (Emphasis added)

Thus, VSED death is no more “natural” than physician-assisted suicide by lethal overdose. It just takes longer.

One of the featured speakers was Dr. Timothy Quill, described as “a veteran palliative care physician at the University of Rochester Medical Center.” Unmentioned is that Dr. Quill is a long-time activist for physician-assisted suicide and 2012 president of the American Academy of Palliative and Hospice Medicine which is now “neutral” on assisted suicide. He was also the respondent in the 1997 US Supreme Court Case Vacco v Quill arguing for the constitutional right to physician-assisted suicide.

VSED AS A “REASONABLE” OPTION FOR “PEOPLE WITH SERIOUS ILLNESSES WHO WANT TO HASTEN THEIR DEATHS”

Although Dr. Quill claims that 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”.

In the article, they wrote about the case of BG, a radiology doctor with an eventually fatal brain tumor, who “did not want to die but was fearful of becoming physically dependent and intellectually impaired.”

As they wrote: “BG stopped eating and drinking. The initial week was physically comfortable and personally meaningful.” However, “On day 10, BG became confused and agitated and began having hallucinations. The peace and comfort that he and his family had achieved began to unravel.”

His intravenous morphine drip to control his headaches was increased to cause terminal sedation and he died.

Byock and Quill conclude that   “Medicine cannot sanitize dying or provide perfect solutions for all clinical dilemmas. When unacceptable suffering persists despite standard palliative measures, terminal sedation and voluntary refusal of food and fluids are imperfect but useful last-resort options that can be openly pursued.” (Emphasis added).

THERE ARE NO RELIGIOUS OBJECTIONS TO VSED?

In her article, Ms. Span makes an effort to make VSED sound morally and ethically acceptable when she states:

“Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.”

Actually, many people-religious and non-religious- as well as disability groups like Not Dead Yet have objected to VSED.

And for Catholics, the Vatican Charter for Health Care Workers specifically states :

“The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia.” (Emphasis added)

In addition, the Charter also addresses the concept of terminal sedation:

Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient’s suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of ‘living his own life’, by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is ‘a truly deplorable practice’.” (Emphasis added)

EXPANDING VSED

As Ms. Span observes there are “obstacles” still to overcome in the quest for universal acceptance of VSED including whether people with dementia can “pre-choose” VSED by request or “living will”  while still well.  Another issue includes legal cases where even non-terminal residents or their relatives sue to make nursing homes stop even spoon-feeding.

The Compassion and Choices death machine rolls on and in many different directions but the goal remains death on demand. Apathy is not an option.

Is Compassion and Choices Aiming to Become the “Planned Parenthood” of Euthanasia?

With over $22 million in 2015 net assets,  a 4 star rating from Charity Navigator, enthusiastic media coverage and a new  Federal Policy Agenda for 2016 and Beyond” , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.

While Compassion and Choices claims that it just works to improve care and expand choice at the end of life”, it also admits that “We employ  educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.” (Emphasis added)

THE PALLIATIVE AND HOSPICE CONNECTION

Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM).

Currently, Oregon reports that 92.2% of its physician-assisted suicides were enrolled in hospice care and in Washington state,  93% of its assisted suicides “were assisted by an EOLWA (End of Life Washington) volunteers”. 

Compassion and Choices also supports two other “legal” options for assisted suicide in states that haven’t passed physician-assisted suicide laws. One is “voluntary stopping of eating and drinking (VSED)” and the other is “palliative sedation-Sometimes called terminal sedation”. Significantly, the recommendations include the admission that “VSED includes pain and symptom management” and “Palliative sedation must be medically managed by a healthcare provider”. Thus the need to influence and train hospice and palliative care providers.

No wonder Compassion and Choices lists as one of its accomplishments that it:

Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying in an open, legitimate and accessible way, and integrates the option into patients’ end-of-life care. The culmination of that work was the publication of clinical criteria in the Journal of Palliative Medicine in December 2015. (Emphasis added)

The first line of this article “Clinical Criteria for Physician Aid in Dying” (their preferred name for physician-assisted suicide) is:

“More than 20 years ago, even before voters in Oregon had enacted the first aid in dying (AID) statute in the United States, Timothy Quill and colleagues proposed clinical criteria AID.”  (Emphasis added)

Timothy Quill, MD was the 2012 president and recipient of the Visionary award  of the American Academy of Palliative and Hospice Medicine. Dr. Quill also was the respondent in the 1997 US Supreme Court case Vacco v Quill arguing for physician-assisted suicide as a constitutional right. He lost unanimously then.

Now, Compassion & Choices’ website has a video presentation based on this article  titled  “Understand the Clinical Practice of Aid in Dying”  for doctors and other clinicians. The presentation even offers continuing medical education credits.

This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to “studied neutrality”, a position that the American Medical Association itself is now considering.

WHERE THE MONEY AND POWER IS

Compassion and Choices now has its “Federal Policy Agenda / 2016 & Beyond”.

The priorities on its agenda include:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….”  (Emphasis added)

Also included are “Professional Education and Development” training programs for doctors and other providers “in discussing terminal prognoses and death” and  “Policies and Payment Systems” to change medical policies and payments to a “a value-based healthcare payment system” that will “(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies” to withhold   “appropriations or other funds”  for treatment that was “provided but (deemed) unwanted”.

This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat him or her in hope of a good result because of potential lawsuits or reimbursement problems.

Also a priority is “Public Education and Engagement”.  Compassion and Choices bemoans that one survey showed “22 percent of those aged 75 and older had neither written down nor talked to someone about their treatment preferences at the end of life.”

So naturally Compassion and Choices recommended strengthening the Centers for Medicare and Medicaid Services’ proposal to “reimburse doctors for communicating with patients about whether and how they would want to be kept alive if they become too sick to speak for themselves.”  This of course involves “living wills” and other advance directives that give people a list of some medical treatments or care to automatically refuse by a check mark. Unfortunately but tellingly, these directives include no explanation of the treatments themselves or their risks and benefits which is crucial for the informed consent or refusal required if the person was making the decision while fully conscious.

CONCLUSION

Compassion and Choices has been very involved in many legal cases about assisted suicide including the 1997 US Supreme Court’s Vacco v Quill decision finding no constitutional right to physician-assisted suicide. Undeterred, the organization continues to push for legalization of assisted suicide by fighting state by state while hoping for a possible future US Supreme Court decision that, like Canada’s in 2015, would legalize medically assisted suicide throughout the country.

In the meantime, if Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently  “free consultation, planning resources, referrals and guidance”

As an article by Ashton Ellis has astutely observed ,

“The effort by pro-euthanasia group Compassion & Choices to use Brittany Maynard’s story to push physician-assisted suicide is part of a larger strategy. When talking about end-of-life issues, a strategically crafted frame points to only one logical conclusion: I’d rather be dead.”

Why Should Physician-Assisted Suicide Laws Grant Special Privileges?

A May 2016 Gallup poll titled Euthanasia Still Acceptable to Solid Majority in US”   reports that now 69% of those surveyed agree that “doctors should be allowed by law to end a patient’s life by some painless means” if the person “has a disease that cannot be cured” and “if the patient and his or her family request it”.  (Emphasis added)

There is also reported  growing support among doctors  for medically assisted suicide.

This is alarming but should not be surprising in view of the intense and usually one-sided portrayal  of assisted suicide as “courageous” and honorable while unassisted death is routinely portrayed as agonizing to both the family and the patient.

However, there are few healthcare providers who actually want to personally participate in ending a life even when they say they support legalizing assisted suicide. This is one reason why Compassion and Choices, the former Hemlock Society, has been involved in most of the assisted suicides in Oregon and Washington.

The reluctance of most doctors and nurses to participate in assisted suicide has come about despite the unique and special protections given to healthcare providers who participate in medically assisted suicide that can actually encourage healthcare providers to participate without fear of legal consequences.

Note two of these provisions in the Oregon law :

“The Health Services shall make rules to facilitate the collection of information regarding compliance with ORS 127.800 to 127.897. Except as otherwise required by law, the information collected shall not be a public record and may not be made available for inspection by the public.” (Only an “an annual statistical report of information” is made public.) (Emphasis added.)

And

No person shall be subject to civil or criminal liability or professional disciplinary action for participating in good faith compliance with ORS 127.800 to 127.897. ” (Emphasis added.)

There is also no requirement that the doctor or anyone else witness or even be present at the lethal overdose.

But why are the activists and  lawyers who write these laws not challenged when they purposely omit  the stringent documentation and oversight required for any  other medical intervention by relying on doctors’ self-reporting the process  while also granting these doctors virtual immunity from any legal, civil or professional liability  for coercion, complications, abuse etc.?

One answer is that this allows the media and even doctors like Dr. Ezekiel Emanuel (one of the architects of Obamacare) to declare:

“Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices.”  (Emphasis added)

The second answer is that these provisions allow assisted suicide doctors  (who obviously have more in common with the infamous Dr. Jack Kevorkian than the iconic Marcus Welby, MD of the 1970s)  to privatize the death and thus prevent any real investigation, followup or even serious medical research as well as allowing the coverup of any problems.

Apparently, nothing can be allowed to interfere with the carefully manufactured image of a kindly doctor helping a patient in excruciating pain to have a quick painless demise.

No other area of medical practice-even lethal injection execution-is allowed such secrecy and immunity.

Legislatures and the public need to know and challenge these outrageous provisions as well as being informed about the personal and societal dangers of assisted suicide itself. We must demand truth, transparency and accountability, especially when life and death are at stake.

 

Ethics and Alzheimer’s-Part Two: Feeding Tubes

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an  op-ed on the Cruzan case titled “Feeding is not Extraordinary Care  and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic  medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer’s Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by  vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality  of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

UP CLOSE AND PERSONAL

One of my oldest friends, “Dr. Mary” (not her real name), is a pro-life doctor who asked me years ago to be her power of attorney for health care if she became incapacitated. She had never married and had no close relatives. She told me what she wanted, especially in light of the Nancy Cruzan case, and signed an advance directive available through our archdiocese.

My friend now has presumed Alzheimer’s dementia and she is now in the later stages. She can still feed herself, albeit somewhat messily. She no longer remembers my name or her friends’ names but she is delighted when we come.

At almost 90 and with inevitable death approaching, she now has a Do Not Resuscitate (DNR) order but her nursing home is well aware that this does not mean any reduction in care or attention.

Along with her other friends who visit and help, our goal now is to make Dr. Mary as happy and safe as possible. If she needs spoon-feeding, she will get it. All of us hope that Dr. Mary will never need a feeding tube but she will not be denied one if necessary.

But best of all, Dr. Mary will continue to receive our love until her Lord calls her home.

Can We Choose to Live?

In a 2016 study “What does “futility” mean? An empirical study of doctors’ perceptions” in the Medical Journal of Australia distilled this definition from the majority of responses:

Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of:

  • improving quality of life;

  • sufficiently prolonging life of acceptable quality; or

  • bringing benefits that outweigh the burdens of treatment

Alarmingly, the article also states: “Doctors may reach a view that treatment is futile, informed by their definition of futility and clinical indicators such as functional status, disease severity, and age.” (Emphasis added.)

Over 10 years ago, I wrote an article “Futility Policies and the Duty to Die” about little-known futility policies being promoted, even in Catholic hospitals. These policies allow doctors and ethics committees to overrule patients’ or families’ decisions to continue  care or treatment when a person’s prognosis or “quality of life” was considered too poor.

In February, I wrote about the still not passed Simon’s Law here in Missouri that exposed the secret futility policies that led to the death of Simon Crosier, a baby with Trisomy 18.

However, a couple of weeks ago, a horrified nurse friend showed me two health care directive she recently received as a patient. One was from a Catholic  health care facility and the other was a standard Missouri durable power of attorney directive . The wording in both made her question whether such futility policies were now being incorporated into such directives.

I understand her concern.

THE CATHOLIC  DURABLE POWER OF ATTORNEY FOR HEALTH CARE DIRECTIVE

A person signs such a directive in order to have a family member or other trusted person make health care decisions when they are incapacitated. An legally incapacitated person is  defined as  a “Person unable to make rational decisions or engage in responsible actions. Mental and/or physical deficiency, disability, illness, drug use causing temporary or permanent impairment.”

“Living wills” and other advance health care directives,  invented by so-called “right to die” groups, claimed to give people the power to choose at the end of life

Remembering the prolonged dehydration deaths of Nancy Cruzan and Terri Schiavo, two non-terminally ill but severely brain-injured women said to be in the so-called “persistent vegetative state”, a person might sign a directive but want to prevent such a terrible death for himself or herself.

However, while this Catholic directive has a section to make such a decision, it also an asterisked section attached to both withdrawal and refusal of withdrawal:

I DO NOT AUTHORIZE my Agent/Proxy to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water) as  permitted by law.*

*(In a XXXXX health care facility, nutrition and hydration may be withheld or withdrawn if I have an irreversible condition which is end-state or terminal AND if the means of preserving my life have likely risks and burdens which outweigh the expected benefits or are disproportionate without a reasonable hope of benefit.) (Emphasis added)

Using such terms as “end-state or terminal”  could, for example, apply  not only to a “persistent vegetative state” but also to Alzheimer’s or other dementia. “Artificially supplied” could encompass a simple IV while the asterisked section inexplicably does not even include the words “artificially supplied” before the food and water.  Along with using terms like “disproportionate without a reasonable hope of benefit” without stating who makes that determination or what the criteria is for benefit, the average person could be understandably confused in a real life situation.

THE MISSOURI DURABLE POWER OF ATTORNEY DIRECTIVE

Many, if not most, Missouri hospitals have this directive.

This directive has a section stating:

If I am persistently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or terminal illness or condition, I direct that all of the life-prolonging procedures that I have initialed below be withheld or withdrawn. (Emphasis added)

This list includes not only “artificially supplied nutrition and hydration” but also antibiotics, CPR and “all other life-prolonging medical or surgical procedures that are merely intended to keep me alive without reasonable hope of improving my condition or curing my illness or injury.” (Emphasis added) Note that, according to the directive, a person need not have a terminal illness or be in a coma to qualify for withdrawal.

The next section can seem reassuring if a person has qualms about a decision to withdraw treatment or care being made too quickly or influenced by age or disability.  However, the directive only states that such treatments or care may  be tried-at the doctor’s  discretion-for an undefined “reasonable”period of time before withdrawal. Unfortunately, this section also includes automatic consent to pain relief, even in dosages that can suppress breathing and appetite as in terminal sedation:

3. However, if my physician believes that any life-prolonging procedure may lead to a recovery significant to me as communicated by me or my Agent to my physician, then I direct my physician to try the treatment for a reasonable period of time.  If it does not cause my condition to improve, I direct the treatment to be withdrawn even if it shortens my life.  I also direct that I be given medical treatment to relieve pain or to provide comfort, even if such treatment might shorten or suppress my appetite or my breathing, or be habit-forming. (Emphasis added)

The Catholic health directive also includes this section, almost verbatim.

CONCLUSION

With the help of the media, mentally disabling conditions like Alzheimer’s are often portrayed to the public as a fate worse than death and a terrible burden on a family. Tragically, the “right to die” mentality has led many people to conclude that they should die if they develop such conditions or, if dying, that their death may be accelerated to spare their families.

As a nurse who has seen the problems with advance directives firsthand, I helped design my own durable power of attorney advance directive without exemptions or checkoffs that could be misused or misinterpreted. I also educated my husband and family about the medical ethics involved.

As I wrote in my blog Living with “Living Wills”, there are better alternatives available to the standard kinds of advance directives even though no directive is foolproof.

Adequately informed consent is required for legal consent to surgery. Shouldn’t advance directives that involve life or death be held to the same standard before signing?

 

 

Conscientious Objection, Conscience Rights and Workplace Discrimination

The tragic cases of  Nancy Cruzan and Christine Busalacchi , young Missouri women who were claimed to be in a “persistent vegetative state” and starved and dehydrated to death, outraged those of us in Missouri Nurses for Life and we took action.

Besides educating people about severe brain damage, treatment, cases of recovery and the radical change in medical ethics that could lead to the legalization of euthanasia, we also fought for healthcare providers’ rights against workplace discrimination for refusing to participate in deliberate death decisions. We talked to nurses who were threatened with termination.

Although Missouri had some protections against forcing participating in abortion, there were no statutes we could find where health care providers were protected against being forced to participate in deliberate death decisions. We were also told by some legislators that our chance of success was almost nil

Nevertheless, we persisted and after years of work and enduring legislators watering down our original proposal to include lethal overdoses and strong penalties, Missouri Revised Statutes, Section 404.872.1 was signed into law in 1992. It states:

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)

Fast Forward to Today

In 2016, we face groups like Compassion and Choices that have pushed assisted suicide legislation through in some states and hoping for an eventual sweeping Supreme Court decision making assisted suicide a constitutional right like abortion.

Some European countries like Belgium and Holland have virtual euthanasia on demand for even non-terminally ill people of any age. In Canada, their Supreme Court has forced assisted suicide on that country and now the province of Quebec has lethal injection kits available to any doctor.

Not surprisingly, conscience/workplace rights for health care providers are being vigorously fought both in those countries and here in the US.

For example, Compassion and Choices’ Barbara Coombs Lee, one of the architects of Oregon’s assisted suicide law, claims that strong conscience-right protections encourage “workers to exercise their idiosyncratic convictions at the expense of patient care” at the end of life.

Hope on the Horizon?

In May, a hospital in Poland stopped performing abortions after every single doctor signed a pledge refusing to do them.

Now, several hospitals in Santa Barbara  and Palm Springs as well as Providence medical centers are opting out of the new California assisted suicide law.

Personally, I believe that if people are given a choice when they are sick, they would naturally prefer a hospital that is committed to care rather than assisted suicide.

Thus, conscientious objection, workplace discrimination/conscience rights laws and the power of institutions dedicated to ethical health care can help turn the tide against assisted suicide laws or at least save some lives and mitigate some of the damage caused by assisted suicide laws. It may take a long time before killing sick or disabled people is again seen as abhorrent and unethical but the effort will be worth it.

As I have said before, “NO!” is a powerful and potentially lifesaving word.

 

Brain Death: Do We Know Enough?

 

The following is my article published in the National Catholic Bioethics Quarterly (Spring 2016): 55-59. © 2016 The National Catholic Bioethics Center Quarterly.

Abstract. Every year, people make decisions based on trust in the certainty of diagnoses of brain death. These decisions range from signing an organ donation card to withdrawing life support from a loved one. Two recent developments have revived concerns about medical standards for determining brain death. One is a recent study on variability in brain death policies in the United States; the other is the filing of a federal lawsuit to rescind the death certificate of Jahi McMath, a teenager who appears to have survived a 2013 declaration of brain death. The author examines these developments and asks whether trust in the certainty of brain-death determinations is currently warranted.

Nancy Valko, RN, ALNC, is a legal nurse consultant and a spokesperson for the National Association of Prolife Nurses. A registered nurse since 1969, she has worked mostly in critical care as well as hospice, oncology, and home health. She is a past co-chair of the St. Louis Archdiocesan Respect Life Committee. She received the People of Life award from the US Conference of Catholic Bishops in 2015.

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Two recent developments on the controversial issue of brain death have revived concerns about the medical standards currently used for determining brain death. One was the publication of a JAMA Neurology study of 508 US hospitals, titled “Variability of Brain Death Policies in the United States,” by Dr. David Greer et al., which found major variations in their policies for determining brain death. The study concluded that “hospitals should be encouraged to implement the 2010 AAN [American Academy of Neurology] guidelines to ensure 100% accurate and appropriate determination of brain death.”1

The other development surrounds a federal lawsuit pushing to rescind the death certificate of Jahi McMath. McMath, a teenager from Oakland, California, was declared brain dead two years ago but is apparently still surviving and may be showing some signs of improvement.2

Every year, people make decisions—to withdraw life support from loved ones or to sign organ donation cards—based on trust in the certainty of a diagnosis of brain death. Is such trust warranted?

A Short History of US Brain-Death Policies

Although the concept of irreversible coma was first introduced in 1959, the cur- rent legal and medical concept of brain death gained widespread acceptance after the publication, in 1968, of “A Definition of Irreversible Coma,” the report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

The stated purpose of the Harvard report was “to define irreversible coma as a new criterion for death,” because new technology such as ventilators could maintain a patient “whose heart continues to beat but whose brain is irreversibly damaged.” The committee noted that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” The Harvard paper laid out four conditions for a diagnosis of brain death: (1) unreceptivity and unresponsitivity, (2) no movement or breathing, (3) no reflexes, and (4) a flat electroencephalogram, providing confirmatory data that should be utilized “when available.”3

Starting in the early 1970s, various state legislatures and courts acted to turn brain death into a legally recognized standard for determining death by loss of all brain function. Patients declared brain dead could then be removed from life support measures, like mechanical ventilation, without legal ramifications or their organs could be harvested while their hearts were still beating and a ventilator kept their lungs functioning.

In 1981, the US Uniform Determination of Death Act formally added “irreversible cessation of all functions of the entire brain, including the brain stem” to the legal definition of death.4 However, while the act set the general legal standard for determining brain death, it did not dictate the medical criteria. Many state laws  just cite “accepted medical standards” for determining brain death. Over the years, efforts were made to standardize these medical criteria, most recently by the AAN guidelines established in 2010.5

Not All Hospitals Comply with the Guidelines

In an interview with Medscape, David Greer, the lead author of the study in JAMA Neurology, expresses concern that not all of the 508 US hospitals surveyed were “100% compliant” with the 2010 guidelines by the American Academy of Neurology. Of the hospitals surveyed, the Medscape article notes that only “about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination.” 6 The article also notes that not all hospital policies require testing of lower brainstem function to establish the loss of all brain function, and not all comply with other AAN recommendations such as establishing the cause of the brain dysfunction, the absence of effects of specific medications like sedatives, and crucial aspects of the apnea test.

One of the potentially disastrous consequences of these inconsistencies in hospital testing policies is that a person can be treated as a living patient at one hospital but declared brain dead at another.

Would full compliance with the 2010 guidelines “ensure 100% accurate and appropriate determination of brain death”? Probably not, given the findings of the 2010 report updating the AAN guidelines.7 Eelco Wijdicks et al. observe that “many of the details of the clinical neurologic examination to determine brain death can- not be established by evidence-based methods. The detailed brain-death evaluation protocol that follows is intended as a useful tool for clinicians. It must be emphasized that this guidance is opinion-based. Alternative protocols may be equally informative.” They also note that there is “insufficient evidence” to determine such crucial standards as “the minimally acceptable observation period to ensure that neurologic functions have ceased irreversibly,” “the comparative safety of techniques used for apnea testing,” and the accuracy of “newer ancillary tests [in confirming] the cessation of function of the entire brain.”8

The significance of these criteria is highlighted in a 2012 article, “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” by Ari Joffe et al.9 The authors note, “It has been shown that some brain functions continue after accurately clinically diagnosed BD (brain death), including EEG activity in 20%, evoked potential activity in 5%, and hypothalamic neuroendocrine function in > 50%. These activities may be explained by the finding that continued brain blood flow occurs in 5–40% of BD patients, and pathologic destruction of brain does not occur in more than 40% of BD patients (even after over 24–48 hr. of maintained circulation).”10 Thus there seems to be reasonable cause for concern whether even 100 percent compliance with AAN guidelines would completely ensure the accuracy of a diagnosis of brain death or the validity of some critical brain-death tests.

Jahi McMath

In December 2013, thirteen-year-old Jahi McMath suffered cardiac arrest after undergoing surgery for sleep apnea at Children’s Hospital Oakland, in California. Although doctors managed to resuscitate her, they declared McMath brain dead and prepared to remove the ventilator. Hoping she might recover, however, the family insisted that it remain in place.

After several court battles, a judge permitted McMath’s family to transfer her to a facility in New Jersey that allowed the continued use of the ventilator. Two years later, McMath’s family is still fighting, suing in federal court have her death certificate rescinded.11 According to the family’s attorneys, “Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.” 12

A ruling to rescind McMath’s death certificate would have profound implications for the medical and legal determination of brain death, especially since her initial diagnosis was confirmed by multiple doctors in a well-respected hospital.

McMath is not the first person to survive for a prolonged time after a brain- death diagnosis. Alan Shewmon, MD, studied approximately 175 cases of long-term survival after a declaration of brain death, for periods ranging from one week to more than fourteen years.13 In other cases, pregnant women declared brain dead have been able to gestate unborn babies for weeks or months until a healthy delivery.14

Most concerning of all are cases like that of Zach Dunlap, a young man from Oklahoma who was declared brain dead after an all-terrain vehicle accident in 2008. Testing showed no blood flow to his brain, and Dunlap was being considered for organ donation when a relative discovered a physical response from Zach. Four months later and already making plans to return to work, Dunlap appeared on NBC’s Today show, where he told hosts that he heard a doctor say he was dead, and it “just made me mad inside.”15

Alarmingly, there have been other reported “near misses” like Dunlap’s that also did not lead to rigorous medical investigations to determine what went wrong with the initial brain-death determinations. Yet experts continue to maintain that there is “no documented report of patients regaining brain function after being declared brain dead,” although some allow that “maybe mistakes happened and they weren’t reported.”16

Persistent Controversies

Controversy about brain death has simmered for years in bioethical and medical circles. Influential  experts such as Robert Truog and Franklin Miller argue that doctors should drop the rule requiring that people be declared dead before vital organs are taken, and instead merely obtain “valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury.”17

The Catholic Church has been involved in the controversy over brain death since the Harvard report cited Pope Pius XII’s 1957 address “The Prolongation of Life” to support its recommendations.18 Since then, there have been several papal statements and conferences on the determination of brain death. Collectively, these are widely seen to indicate a cautious acceptance of the concept of brain death that is based on the assurance of medical certainty to provide moral certainty.

When the issue is death, medical ethics must be backed up by accurate medical facts. In the case of the legal and medical definition  of brain death as “irreversible cessation of all functions of the entire brain, including the brain stem,”19 medical science, not philosophical speculation, must provide the proof beyond a reasonable doubt.

When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.

Footnotes:

1. David M. Greer et , “Variability of Brain Death Policies in the United States,” JAMA Neurology 73.2 (February 1, 2016): 213, doi: 10.1001/jamaneurol.2015.3943.3943. The updated AAN guidelines are presented in Eelco F. M. Wijdicks et al., “Evidence-Based Guideline Update: Determining Brain Death in Adults—Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology 74.23 (June 8, 2010): 1911–1918.

2. McMath et v. State of California et al., no. 4:2015cv06042 (N.D. Cal. Dec. 23, 2015); see David DeBolt and Malaika Fraley, “Jahi McMath: Family Sues in Federal Court to Have Brain-Dead Girl Declared Alive,” Mercury News, December 24, 2015, http://www.mercurynews.com/.

3. Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, “A Definition of Irreversible Coma,” JAMA 6 (August 5, 1968): 337, doi: 10.1001/jama.205.6.337. P. Mollaret and M Goulon identified irreversible coma in their essay “Le Coma Dépassé (memoire preliminaire),” Revue Neurologique 101.1 (July 1959): 3–15.

4.National Conference of Commissioners on Uniform State Laws, Uniform Determination of Death Act, approved 1980/1981, http://www.uniformlaws.org/.

5. Allison Gandey, “New Brain Death Guidelines Issued,” com, June 10, 2010, http://www.medscape.com/.

6. Pauline Anderson, “Not All Hospital Brain Death Policies Comply with Guidelines,” com, December 30, 2015, http://www.medscape.com/, emphasis added.

7. Wijdicks et al , “Evidence-Based Guideline Update.”

8. Ibid. 1911, 1914, emphasis added.

9. Ari Joffe et , “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” Annals of Intensive Care 2.1 (February 17, 2012): 1–8, doi: 10.1186/2110-5820-2-4.

10. Ibid, 4

11. DeBolt and Fraley, “Jahi McMath”

12. Winkfield v. Children’s Hospital Oakland, no. RG-15760730, first amended com plaint (CA, Ct. Alameda County, Nov. 4, 2015), para. 36, original emphasis.

13. Alan Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Con- sequences,” Neurology 51.6 (December 1998): 1538–1545.

14. Majid Esmaeilzadeh et , “One Life Ends, Another Begins: Management of a Brain-Dead Pregnant Mother—A Systematic Review,” BMC Medicine 8.74 (November 18, 2010): doi: 10.1186/1741-7015-8-74.

15. Natalie Morales, “‘Dead’ Man Recovering after ATV Accident,” NBC News, March 24, 2008, nbcnews.com/.

16. Pauline Anderson, “Not All Hospital Policies ”

17. Robert Truog and Franklin G. Miller, “The Dead Donor Rule and Organ Transplantation,” New England Journal of Medicine 359.7 (August 14, 2008): 675, doi: 10.1056/NEJMp0804474.

18. Ad Hoc Committee of Harvard Medical School, “Definition of Irreversible Coma,” 88 note 1, citing Pius XII, “The Prolongation of Life,” Address to an International Congress of Anesthesiologists (November 24, 1957), The Pope Speaks 4 (Spring 1958): 393–398.

19. Commissioners on Uniform State Laws, “Uniform Determination of Death Act,” sec 1.

Could Brittany Maynard Have Been Saved?

This week, CBS’ “60 Minutes” TV show reported that FDA has just granted “breakthrough status” for an innovative treatment for glioblastoma brain cancer that was first reported by 60 Minutes on March 29, 2015.

Brittany Maynard had glioblastoma and died by physician-assisted suicide on November 1, 2014, just 5 months before the original TV segment aired.

Brittany Maynard was a young newly wed who, with enormous media publicity and the support of the pro physician-assisted suicide group Compassion and Choices, announced her intention to commit assisted suicide and asked for donations to the Brittany Maynard Foundation to raise money to help Compassion and Choices fight for legalization of physician-assisted suicide throughout the US.

Using Brittany’s story and foundation, Compassion and Choices was finally successful after years of failed attempts to get a physician-assisted suicide law passed in California.

Did Brittany, her doctors or Compassion and Choices know about the promising clinical trials for glioblastoma reported by “60 Minutes” before Brittany took her life with a physician ordered lethal overdose?

Although reported medical breakthroughs are frequent and often over-hyped or prove disappointing, information is available at ClinicalTrials.gov, a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. This service was developed by the National Institutes of Health and the Food and Drug Administration and made available to the public in February 2000.

The Decision to Forego Treatment

According to Brittany’s own words:

After months of research, my family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left…

And

I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that.

No one is ethically obligated to try any experimental or unduly burdensome treatment for such conditions but many people do so not only for a possible cure but also to potentially gain more time or to advance medical research. I saw this when I was an oncology nurse and also in my personal life.

For example, a few years ago, a friend developed a usually terminal lung cancer and agreed to try  an unusual and massive combination of chemotherapy and radiation. As explained by her doctors, the side effects were very tough on her but today she is happy, active and enjoying her life and her grandchildren. Her cancer continues to be in remission. Success stories like this were unimaginable of when I first became a nurse.

But while treatment of a serious or terminal condition can be a personal choice, killing oneself-with or without medical assistance-must not be treated as just another valid treatment “option”.

Hard Cases Make Bad Law

“Hard cases make bad law” is an old legal adage that means that an extreme case is a poor basis for a general law that would cover a wider range of less extreme cases. This is particularly true when it comes to physician-assisted suicide where the slippery slope expanding the pool of potential victims has become a superhighway.

I also remember when AIDS, not glioblastoma, was the “hard case” used to justify physician-assisted suicide in the 1990s because it was also considered terminal.

But by 1998, the CDC issued the first national treatment guidelines for the use of antiretroviral therapy in adults and adolescents with HIV  Today, AIDS is no longer considered an automatic death sentence and those with AIDS can even achieve normal lifespans.

But how many despairing people in the 1990s resorted to suicide, assisted or not, when the treatment for AIDS was so close?

Conclusion

Hope can be life-enhancing as well as life-saving.

Sadly, as one brain tumor expert poignantly wrote, Brittany Maynard’s “suicide was a blow to fellow brain tumor patients who were living in hope”.

 

What Is-Or Should Be- the Future of Nursing?

In a recent Medscape News article “Back to the Future of Nursing: What Progress Have We Made?” , Laura A. Stokowski, RN, MS reported on the results five years after the national Institutes of Medicine (IOM) issued a 2010 report titled “The Future of Nursing: Leading Change, Advancing Health” that was designed to be:

“a wake-up call that exposed the many barriers that prevented the nursing profession from contributing fully to the healthcare system: an aging workforce, regulatory restrictions on nursing practice, fragmentation of healthcare, limited capacity of the nursing education system, and lack of workforce data. It was also a catalyst for finding solutions to these problems.”

The followup report titled “Assessing Progress on the Institute of Medicine Report The Future of Nursing” came out in December 2015 and reported only some progress in their key questions:

  -Have scope-of-practice barricades been pushed aside? Are nurses being permitted to practice to the full extent of their education and licensure?

-Are more nurses earning baccalaureate, master’s, and doctoral degrees?

-Are new graduate nurses being transitioned to the profession more safely and effectively through nurse residency programs?

-Does the ethnic composition of the nursing workforce more closely match the level of diversity in the general population?

-Have opportunities expanded for leadership and interprofessional collaboration in healthcare?

If you are a nurse and were unaware of all this, you are not alone. As a full-time ICU nurse, neither I nor my fellow nurses were aware of this study at that time. The only change we noticed was when our hospital suddenly announced  that every RN must have a BSN by 2021 or be terminated.

I wish we had been asked for our input!

WILL MORE DEGREES, DIVERSITY AND EXPANDED RESPONSIBILITIES REALLY HELP NURSING?

Instead of the IOM focus on these issues, I would propose  at least four measures to really help the majority of us who work in health care institutions to provide the quality care we want for our patients as well as to reduce the stresses of nurses that often lead to burnout and quitting the profession.

 1. Consider bringing back the head nurse

When I started nursing over 47 years ago, we had head nurses who knew the patients, doctors and staff by working with them daily to make sure care was coordinated, staffing was adequate,  and problems were addressed quickly.

Now we have managers and other administrators who often are not RNs and who are often rarely seen or available because of endless meetings. The formerly close working relationships with head nurses have now become almost adversarial relationships with managers as cost containment measures, endless new policies based on legal risk, mandated government regulations, inadequate staffing etc., grind down nurses.

 2. Try retention incentives instead of signup bonuses

Years ago when there was a nursing shortage, signup bonuses were offered to potential nurse employees. I was asked by a director of nurses if I thought the bonuses were high enough.

I told this director that it might be better to try retention bonuses since the newly employed nurses we trained often left after the required year of service to get a signup bonus at another hospital. This wasted the money and time used to assign a precepting nurse to support the temporary new nurse during the weeks-long orientation to our hospital policies and procedures.

A retention bonus would help keep our good, experienced nurses who were already familiar with the doctors, other staff, departments and hospital policies. Such nurses are also often excellent resources for the rest of the staff. This could help prevent some mistakes caused by inexperience or unfamiliarity. In addition, such bonuses could also save money  and increase staff morale by reducing a high turnover rate.

3. Don’t automatically force nurses to get a BSN (bachelor’s degree in nursing)

As I wrote in my March blog “Is it Time for a Two-Track Nursing Education System?”, there is a lack of openings in many BSN programs, not to mention the time stresses and money involved in trying to coordinate full-time 12 hour hospital shifts while  caring for a family and taking classes on a deadline.

Yet there will always a need for excellent bedside nurses who strive to improve their skills, whether or not they decide to pursue a BSN. I believe that it should be a choice, not a requirement, to seek an advanced degree only in nursing.

In the meantime, I believe we should improve basic nursing education, especially by increasing clinical experience and providing mentoring to new graduates.

4. Good nurses deserve to have both conscience and whistle blower rights respected

An April, 2016  Medscape News article “Two Nurses Who Spoke Up, Lost Their Jobs, and Sued”  chronicled the years-long battle of 2 nurses who discovered and reported patient safety problems at their hospitals and lost their jobs as a result of their patient advocacy efforts. Unfortunately, being a good nurse does not automatically provide job security or protection.

Good nurses need both conscience and whistle blower rights protected. Despite rapid changes in historic ethical  and legal principles involving life-termination and abortion issues, most nurses still don’t want to actively participate. Neither do most nurses want to be intimidated from reporting medical incompetence or serious violations of standards involving patient safety.

However, good nurses often find themselves  at risk of harassment or even termination if they refuse to participate in deliberate life-ending decisions or refuse to ignore actual or potential harms to their patients.

Unfortunately, the American Nurses Association and state boards of nursing do not offer much help to nurses in such difficult situations. As the Medscape News article states, even though one nurse cited documents from the American Nurses Association (ANA) code of ethics  which say that nurses have a professional responsibility to protect patient safety:

 “The tricky part—and this is where an experienced attorney is helpful—is understanding the ins and outs of state laws that describe the exceptions to “at will” employment. If an employee reports a patient safety problem and/or is a member of a protected class (older, or a minority), the employer will probably try to prove that the employee was fired for another reason—poor performance, for example. A court will weigh the evidence and decide whether the public policy at issue is more important than upholding the doctrine of at-will employment.”

CONCLUSION

Nurses share a special bond and I am proud to be part of a truly noble profession.  But we need to be able to speak out without fear to insist on the highest standards to improve our healthcare system for both ourselves and especially our patients’ sake.

Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia

My mother developed Alzheimer’s disease, the most common type of dementia, in her early 60s. Later on, she was diagnosed with an aggressive thyroid cancer that required a surgical opening in her throat called a tracheostomy so that she would not suffocate from the tumor. My father and siblings were naturally distraught and overwhelmed.

I was 38 years old at the time and a suddenly single mother with 3 young children. My youngest daughter Joy was 2 years old and in diapers. My family looked to me for help.

As a nurse, I thought I knew the challenges of caring for someone with Alzheimer’s as well as someone with cancer and I was glad to use that knowledge to care for my mother. But, especially at first, it wasn’t easy.

Mom would ask the same questions over and over, have episodes of hostility and paranoia and periodic insomnia. She also became adept at thwarting the safety measures we used to protect her.

Then, one day near the end of my mother’s life, I sat on a sofa holding hands with both Joy, now over 3 years old, and my mom watching Sesame Street on TV. I was struck by the fact that both of them had the exact same expression of happiness on their faces. It was then that I realized how far we all had come and how much I had learned.

FIVE THINGS MY MOTHER AND MY DAUGHTER TAUGHT ME ABOUT:

1. Getting things done

I soon realized that both my 2 year old daughter and my mother responded best to one direction at a time and the patience to wait until one action was completed before directing another action.

For example, instead of just saying “brush your teeth” and trying to hurry the action along, directing both of them on just one step at a time time ultimately saved both time and frustration on everyone’s part.

I also found that set routines were comforting to both my mother and daughter despite their obvious differences.

2. Answering questions

Like most people caring for a relative with dementia, I found that answering the same question from my mother over and over again was exhausting. Answering different but incessant questions from my daughter was also difficult at times. So I learned the technique of distraction. For example with my mother, I would interest her in another activity such as folding laundry with me. With my daughter, I would often ask her to “read” a book to me. Judiciously used, this kind of pivot would relieve the increasing tension and make both of them happy.

3. Attitude

I made sure to smile often and establish eye contact with both my mother and my daughter. I would work my name into the conversation when I could see my mom trying to remember who I was and I made sure to often say “I love you” and praise the efforts of both my mother and my daughter. I made sure each had my full attention at that time even when I was in a hurry myself.

4. De-escalation

I found that both people with Alzheimer’s and 2 year olds are prone to sudden meltdowns that are difficult to handle. I discovered that watching for increasing agitation, frustration or the need for a nap and taking preemptive measures could often calm the situation before tempers flared out of control.

5. Music

I always found it fascinating that people with late-stage Alzheimer’s, even those who were rarely verbal, would often start singing when they heard a song they knew. The same is true with young children who naturally delight in songs. Our sing-a-longs were great fun for both my mother and my daughter. “You Are My Sunshine” was a special favorite. My daughter Joy is now an adult and a music teacher.

Best of all, my children still have fond memories of their grandmother after almost 30 years.

A FINAL STORY

This year, some married friends of ours buried the wife’s beloved mother who had Alzheimer’s. They and the rest of the family had worked together to take wonderful care of the mother at home as long as possible and in the nursing home where she finally died.

As the mother’s Alzheimer’s progressed to a later stage, she started to have vivid hallucinations.

One day, the couple made plans to take the mother to her favorite restaurant but she refused to go without the “two little girls over there.” The wife started to tell her mother that she was having hallucinations but her husband gently stopped her. Instead, he told the mother that the little girls weren’t hungry. The mother smiled and immediately got up to go to the restaurant.

The wife later asked me if it was OK to “lie” to her mother. I told her that her mom would probably have been embarrassed and upset to hear that she was having a hallucination. She might have even argued about it.

On the other hand, her husband’s response was both kind and respectful of her mother’s dignity. And, technically, those “two little girls” could not be hungry because they were not real.

To me, that kind of loving attitude from both these friends is inspirational. I wish that it was universal.