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In 2002, I wrote a paper titled “Ethical Implications of Non-Heart-Beating Organ Donation” (NHBD) and presented it at Trinity College at a medical ethics conference. At that time, brain death organ donation was well-known, but NHBD was virtually unknown to the public although it comprised about 2% of organ donations at that time.
As I wrote then:
“It is now apparent that the number of organs from people declared brain dead will never be enough to treat all patients who need new organs. ” and “doctors and ethicists have turned to a new source of organs — patients who are not brain dead but who are on ventilators and considered “hopeless”. In these patients, the ventilator is withdrawn and organs are quickly taken when cardiac death (DCD) rather than brain death is pronounced.”
Now, the term “Donation after Circulatory Death” (DCD) is used instead and means:
“Circulatory death occurs when the heart has irreversibly stopped beating and when circulation and oxygenation to the tissues irreversibly stops.” (Emphasis added)
However, with heart transplantation, the heart will be restarted as explained in a March 24, 2023 Medscape article “A ‘Game Changer’ for Heart Transplant: Donation After Circulatory Death Explained”.
In the article, Adam D. DeVore, MD, MHS is interviewed by Ileana L. Piña, MD, MPH and explains how this works and why he is excited:
“Adam D. DeVore, MD, MHS: In the field of heart transplant, DCD or donation after circulatory death is really a game changer. For decades now, we’ve been doing heart transplants from donors who die or have been declared brain dead.
There’s a whole population of potential donors who have very similar neurologic injuries — they’re just not technically declared brain dead — whose organs the family would like to donate. We didn’t have a way before.”
“There are two mechanisms. The family would withdraw care. Somebody affiliated with the hospital would declare that the donor has died. There’s usually a standoff period. That is a little variable, but it’s around 5 minutes.” (All emphasis added)
and added that then:
“…There are then two ways where that heart could be resuscitated or revived, outside the body on the organ care system. Or it could remain in the body through normothermic regional perfusion (NRP), or they’ll go on cardiopulmonary bypass and re-perfuse the heart in the room, and then look at the heart and try to evaluate it before donation. The rest of that donation looks just like every other brain-dead donation.”
…I remember when we were first starting this, I was thinking of how we would explain this to potential recipients and what would this look like. It turns out that something terrible has happened, and families that want to donate organs are relatively enthusiastic and less focused on the details.” (All emphasis added)
ETHICAL CONCERNS
In another March 23, 2023 Medscape article titled “Does New Heart Transplant Method Challenge Definition of Death?, Sue Hughes, a journalist on Medscape Neurology, writes:
“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)
When the NRP technique was first used in the US, these ethical questions were raised by several groups, including the American College of Physicians (ACP).
“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)
Harry Peled, MD, Providence St Jude Medical Center, Fullerton, California, co-author of a recent Viewpoint on the issue said that:
“There are two ethical problems with NRP, he said. The first is whether by restarting the circulation, the NRP process violates the US definition of death, and retrieval of organs would therefore violate the dead donor rule.
“American law states that death is the irreversible cessation of brain function or of circulatory function. But with NRP, the circulation is artificially restored, so the cessation of circulatory function is not irreversible,” Peled points out.
The second ethical problem with NRP is concern about whether, during the process, there would be any circulation to the brain, and if so, would this be enough to restore some brain function? Before NRP is started, the main arch vessel arteries to the head are clamped to prevent flow to the brain, but there are worries that some blood flow may still be possible through small collateral vessels.” (Emphasis added)
Nader Moazami, MD, professor of cardiovascular surgery, NYU Langone Health, New York City, is one of the more vocal proponents of NRP, stating that:
“”Our position is that death has already been declared based on the lack of circulatory function for over 5 minutes and this has been with the full agreement of the family, knowing that the patient has no chance of a meaningful life. No one is thinking of trying to resuscitate the patient. It has already been established that any future efforts to resuscitate are futile. In this case, we are not resuscitating the patient by restarting the circulation. It is just regional perfusion of the organs.” and “We are arguing that the patient has already been declared dead as they have a circulatory death. You cannot die twice.” (Emphasis added)
CONCLUSION
Ms. Hughes also wrote in her article that:
“Heart transplantation after circulatory death has now become a routine part of the transplant program in many countries, including the United States, Spain, Belgium, the Netherlands, and Austria.”
And in the US, “348 DCD heart transplants were performed in 2022, with numbers expected to reach 700 to 800 this year as more centers come online.” And “It is expected that most countries with heart transplant programs will follow suit and the number of donor hearts will increase by up to 30% worldwide because of DCD. ”
So how important is it to have strict medical ethics standards in organ donations?
In a February 9, 2023 Transplant International article titled “Organ Donation After Euthanasia in Patients Suffering From Psychiatric Disorders: 10-Years of Preliminary Experiences in the Netherlands“, it was reported that:
“Over the ten-year study period 2012–2021 59,546 patients underwent euthanasia of whom 58,912 suffered from a somatic (physical) disorder. The number of patients that underwent euthanasia for an underlying psychiatric disorder was 634 (1.1%). An estimated 10% (5955) of patients who undergo euthanasia in general are medically eligible to donate one or more organs (11).” (Emphasis added)
Organ transplants can be wonderful and lifesaving, but we must know all the facts, be able to trust our healthcare providers, and especially not allow the “slippery slope” of legalized assisted suicide/euthanasia to get any steeper.
In my June, 2016 blog “Tolerating Evil” at , I wrote:
“(A) few days after California’s new assisted suicide law took effect, one doctor immediately opened up a dedicated assisted suicide clinic in San Francisco.
Dr. Lonnie Shavelson, 64 and a long-time supporter of physician-assisted suicide, was an emergency room doctor for 29 year and then spend 7 years at an Oakland clinic for immigrants and refugees before taking a 2 year break.
His new assisted suicide business could be quite lucrative. Although Medicare will not pay for assisted suicide costs, Shavelson says he will charge $200 for an initial patient evaluation. If the patient is deemed qualified under California law, Shavelson said he would charge another $1800 for more visits, evaluations and legal forms. (Emphasis added)
Shavelson defends his business by claiming that “..the demand (for assisted suicide) is so high, that the only compassionate thing to do would be to bring it above ground and regulate it.”
Now, a new medical group called American Clinicians Academy on Medical Aid in Dying has been formed with a Board of Directors and Advisors and chaired by the same Dr. Lonnie Shavelson.
The board of this organization includes a Nursing Coordinator, Director of End-of-Life Doula Education, a Volunteer Systems Advisor, as well as Hospice and Palliative Care Advisors including chaplains, nurses and social workers. There is also an “Aid in Dying Ethics Consultation Service”, ethicist, lawyer and pharmacists. An Investigations and Data Collection group is also included as well as State Liaisons in various states.
Also included is Resident Training and Education, Patient Liaisons and Volunteers, Chaplains and End-of-Life Spiritual Advisors, a legal advisor/ethicist, and a member of the San Francisco/Marin Medical Society with a Master’s in Public Health degree.
The American Clinicians Academy on Medical Aid along with the older Death with Dignity organization just had their second conference February 17-18 in Portland Oregon and provided “13 continuing education units for doctors and nurses” and 10 for social workers.
The conference included presentations like “ Some Myths about Aid in Dying”, “State Differences — Present and Future Legal Considerations”, “Hospices and Aid in Dying — A land of many journeys”, “Prognostic Dilemmas in Aid in Dying”, “Medical Aid in Dying for ALS: Navigating Complexities from Prognosis to Ingestion” and “Clinician Attendance on the Aid-in-Dying day — Doctors, nurses, volunteers, end-of-life doulas, hospice staff” and “Socially-Challenging Settings and Circumstances — homeless and impoverished; family conflicts; skilled nursing and long-term care facilities” and “Medically Challenging Cases: Complex gut function; Self-administration by oral, rectal, PEG and ostomy routes” presented by Dr. Shavelson himself. (All emphasis added)
The first National Clinicians Conference on Medical Aid in Dying occurred in 2020 at UC Berkley in California. It was sponsored by groups like UC Davis Health, Mission Hospice and Home Care, the San Francisco Marin Medical Society and the Center for Bioethics and Humanities at the University of Colorado that promotes “Research at the Intersection of Bioethics and Policy for Persons with Disability” (emphasis added) among other groups.
Apparently, Compassion and Choice now has some competition in the relentless campaign to legalize and normalize medically assisted suicide in every US state.
COMPASSION AND CHOICES
Now, Compassion and Choices has a new “Federal Advocacy and Policy-Bringing the voice of the terminally ill to Capitol Hill“ that:
“advances federal legislation and regulatory change focused on:
- Strengthening and expanding the full spectrum of end-of-life care such as advance care planning, hospice care, and palliative care, while protecting end-of-life options and patient autonomy from federal efforts to weaken or overturn federal and state laws.
- Addressing disparities in end-of-life care for historically disadvantaged populations and advancing healthcare equity at life’s end.
- Expanding professional end-of-life care education, training and development for all healthcare professionals.
- Preventing healthcare entities from disregarding patient values and preferences by refusing care due to their ethical directives and policy-based restrictions. (All emphasis added)”
Compassion and Choices strongly opposes the “Assisted Suicide Funding Restrictions Act (ASFRA) (seeking repeal)” that:
“Prohibits the use of federal funds to provide or pay for any healthcare item or service or health benefit coverage for the purpose of causing, or assisting to cause, the death of any individual.” as well as “Seeking to permanently vacate the proposed rule, “Protecting Statutory Conscience Rights In Health Care (83 FR 3880),” from the U.S. Department of Health and Human Services, which attempted to allow medical providers expanded exemptions from critical healthcare services beyond what the law currently allows.”
Compassion also supports effort to “Establish Comprehensive Telehealth Reform” and also ominously, the Palliative Care and Hospice Education Act (PCHETA)
CONCLUSION
In 2018, I wrote the blog “Beware the New Palliative Care and Hospice Education and Training Act” (PCHETA)” about Senate Bill 693.
A similar bill had already passed in the House and this Senate bill was also expected.
As I wrote then:
“As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.
Unfortunately, there is a growing trend towards calling unethical practices ‘palliative’ or ‘hospice’ care.”
And we certainly should not be allocating federal dollars for this.
But, despite the enormous push for the PCHETA, it never passed.
There was great opposition by American Association of Physicians and Surgeons, the National Association of Pro-life Nurses , Sara Buscher, a retired attorney and CPA on the board of the Euthanasia Prevention Coalition – USA. who advocates for the elderly and disabled , the Healthcare Advocacy and Leadership Organization (HALO) and others.
Now, Compassion and Choices is working hard again to get PCHETA passed to “ increase the number of faculty at accredited healthcare programs” and “promote increased education and research in Palliative Care and Hospice care.” (All emphasis added)
If groups promoting medically assisted suicide throughout the US are successful in taking over the ethics education of our health care professionals, eliminating conscience rights for healthcare providers and institutions, continue to dismantle so-called legal safeguards called “obstacles” and allow the same poor oversight and documentation found in Oregon, the first state to legalize assisted suicide, we will see the inevitable and inexorable expansion of medically assisted suicide that we are now seeing in Canada.
We need to demand the highest ethical standards in healthcare to protect ourselves, our healthcare institutions and the most vulnerable among us who need hope and help-not medically assisted suicide.
I was surprised to recently learn that the Alzheimer’s Association had entered into an agreement with Compassion and Choices to “provide information and resources about Alzheimer’s disease”.
Thankfully, the Alzheimer’s Association has now terminated that relationship as of January 29, 2023, stating that:
“In an effort to provide information and resources about Alzheimer’s disease, the Alzheimer’s Association entered into an agreement to provide education and awareness information to Compassion & Choices, but failed to do appropriate due diligence. Their values are inconsistent with those of the Association.
We deeply regret our mistake, have begun the termination of the relationship, and apologize to all of the families we support who were hurt or disappointed. Additionally, we are reviewing our process for all agreements including those that are focused on the sharing of educational information.
As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.” (All emphasis added)
ALZHEIMER’S DISEASE AND COMPASSION AND CHOICES’ RESPONSE
While countries like Belgium and the Netherlands have legalized assisted suicide for Alzheimer’s, no US state allows this-yet.
In the meantime, Compassion and Choices is the well-funded organization promoting medically assisted suicide laws and VSED (voluntary stopping of eating and drinking) for people in states without assisted suicide laws.
Now, Compassion and Choices has a whole section on their website titled “Dementia End-of-Life Care- Identifying your preferences before dementia takes hold” stating that:
“One in two older adults die with Alzheimer’s or another form of dementia” and that ”60% of Americans with dementia receive non beneficial burdensome medical interventions.”
Thus, Compassion and Choices insists that:
“Every mentally capable adult has the right to document their desire to decline medical treatments. In the early stages of dementia, patients may also choose to voluntarily stop eating and drinking. To learn more, go to the Compassion & Choices‘ Dementia Values & Priorities Tool and other resources.” (Emphasis added)
IS VSED REALLY AN EASY WAY TO DIE?
As I wrote in my 2018 blog “Good News/Bad News about Alzheimer’s”:
“Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society titled “Voluntary Stopping Eating and Drinking” states:
“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV), progressive disability, delirium, and somnolence.” (Emphasis added)
Most chillingly, the authors state:
“Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)
The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.
Lastly, on the legal requirement of a cause on the death certificate, the authors state:
“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)
So, like physician assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.
And as I wrote in my 2020 blog “Caring for an Elderly Relative who Wants to Die”, a doctor trying to help his grandfather who did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness” found that just voluntarily stopping food and water (VSED) was too difficult and he had to use “morphine and lorazepam” during the “12 long days for his grandfather to finally die.”.
The lessons this doctor said he learned were that:
“despite many problems with physician-assisted dying (physician-assisted suicide), it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”
And
“stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)
CONCLUSION
Years ago, my mother told me that she never wanted to be a burden on her family.
I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles!
Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.
When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.
“Do you want me to tackle her?!” I asked my friend.
“Oh, no!”, he answered, “I was talking about a feeding tube later on.”
I told him that my mother would die of her disease, not from deliberate starvation and dehydration.
Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.
For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally but I remain alarmed by the all too common attitude that people with Alzheimer’s “need to die” either by VSED or physician-assisted suicide.
I am pleased with the Alzheimer’s Association’s decision to end its agreement with Compassion and Choices.
Several nations like Belgium and the Netherlands have had legalized assisted suicide and/or euthanasia, even for minors and for people just “tired of life” But now the worst is Canada which legally approved MAiD (medical aid in dying) it in 2016, according to Alex Schadenberg of the Euthanasia Prevention Coalition
Alex Schadenberg quotes Kevin Yuill, a professor who spoke at the Euthanasia Symposium in Brussel in November who said:
“Canada has the dubious honour of being the global capital of euthanasia. Through its medical assistance in dying (MAID) programme, Canada killed more people with lethal injections last year than any other country on Earth – many of them poor, homeless or hopeless. And soon, from March 2023, lethal injections will be offered to anyone who judges their mental-health difficulties to be intolerable.”
Even worse, some people with disabilities are saying that they are being pressured to take a lethal overdose.
In a November 2022 UK article titled “Canadian man alleges hospital is pressuring him to end his life by assisted suicide”, a man with a disease affecting his brain and muscles is suing his Canadian hospital after secretly recording the hospital staff, stating:
“They asked if I want an assisted death. I don’t. I was told that I would be charged $1,800 per day [for hospital care]. I have $2 million worth of bills. Nurses here told me that I should end my life. That shocked me”.
Mr. Foley has applied for “direct funding” from the Canadian government to “employ agency workers of his own choosing and manage his schedule”.
The article also cited “a pro-assisted suicide and euthanasia group of doctors in Canada have recently said that doctors have a “professional obligation” to initiate discussion of assisted suicide and euthanasia with patients who might fit the legal criteria. They claim there is nothing in Canadian law which forbids this.”
CANADIAN STATISTICS
The UK article also notes that:
“In 2021, 10,064 people ended their lives by assisted suicide and euthanasia, an increase of over 32% from the previous year, accounting for 3.3% of all deaths in Canada.
According to the latest report on Medical Assistance in Dying from Health Canada, 17.3% of people also cited “isolation or loneliness” as a reason for wanting to die. In 35.7% of cases, patients believed that they were a “burden on family, friends or caregivers”. (Emphasis added)
Canada was set to approve MAiD for people with mental illness but recently, the Canadian government announced its plan to temporarily delay MAiD eligibility for people whose sole medical condition is mental illness.
CONCLUSION
In 1993, just 3 years after Nancy Cruzan, a woman in a so-called “vegetative state” died a long 12 days after her feeding tube was removed in my home state of Missouri, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, a prominent ethicist and 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”.
Ominously, he also noted that:
“(O)ur collective determination as to what lives are worth living” is the very real and frightening potential endgame of legalized euthanasia and it should be stopped now!
In a November 4, 2022 Medscape article titled “‘Lucid Dying’: EEG Backs Near-Death Experience During CPR”, researchers found brain wave recordings taken during in hospital cardiac arrest resuscitation (cardiopulmonary resuscitation) lends support to near-death experiences reported by some people who survived cardiac arrest.
In the Medscape article and according to lead investigator Sam Parnia, MD, PhD:
“These recalled experiences and brain wave changes may be the first signs of the so-called ‘near-death’ experience, and we have captured them for the first time in a large study,” lead investigator Sam Parnia, MD, PhD, with NYU Langone Health, says in a news release.
Identifying measurable electrical signs of lucid and heightened brain activity during CPR, coupled with stories of recalled near-death experiences, suggests that the human sense of self and consciousness, much like other biological body functions, may not stop completely around the time of death, Parnia adds.” (Emphasis added)”
According to the article, the researchers used “audiovisual testing of awareness with continuous real-time EEG and cerebral oxygenation monitoring” during the resuscitation.
While only 53 of the 567 patients survived (9.3%), 28 survivors completed interviews with 11 reporting “unique, lucid experiences during resuscitation.”
According to Dr. Parnia:
“Our understanding of death has gone through a seismic shift in the last few years,” and
“The biological discoveries around death and the postmortem period are completely different to the social conventions that we have about death. That is, we perceive of death as being the end, but actually what we’re finding is that brain cells don’t die immediately. They die very slowly over many hours of time,” Parnia noted. (Emphasis added)
Dr. Parnia presented the findings November 6 at a resuscitation science symposium at the American Heart Association (AHA) Scientific Sessions 2022 in Chicago.
The Medscape article also noted that not everyone agrees:
“Ajmal Zemmar, MD, PhD, with University of Louisville, Louisville, Kentucky, noted that several studies, including this one, “challenge the traditional way that we think of death — that when the heart stops beating that’s when we die.”
The observation that during cardiac arrest and CPR, the brain waves are still normal for up to an hour is “fairly remarkable,” Zemmar told theheart.org | Medscape Cardiology.
“However, whether there is conscious perception or not is very hard to answer,” Zemmar cautioned.
“This type of research tries to bridge the objective EEG recordings with the subjective description you get from the patient, but it’s hard to know when conscious perception stops,” he said.”
WHAT DOES THIS ALL MEAN?
Over the decades, there have been many studies of near-death experiences and an October 31,2022 Medscape article by a nurse practitioner who describes how both negative and positive near-death experiences can impact an individual.
There is even a 2020 Frontiers in Neurology article “The Neurology of Death and the Dying Brain: A Pictorial Essay” that explores some of the potential effects of issues like near-death experiences on the clinical determinations of death and organ donation.
But whether or not you believe in near-death experiences, there is one crucial lesson here: We must always treat any ill person-awake or presumed unconscious-with the respect due any person when we talk to and care for them.
I have often told the story of “Mike”, a young man catastrophically injured in a car crash whose doctor said the if he survived, he would be a “vegetable”. We nurses talked to Mike and eventually he started to respond to us but not the doctor.
Mike was shipped off to a nursing home but almost two year later, he returned to thank us and told us he was getting married. When we laughed and told him how he started to respond to us but not the doctor, Mike became very serious and said he would not respond to the doctor because he heard the doctor call him a “vegetable”!
CONCLUSION
But my favorite story is about working on a medical floor caring for an elderly gentleman who was dying and showed no awareness of his 4 adult sons sitting at his bedside.
I encouraged his sons to talk to him, but they said they didn’t know what to say and didn’t think he could hear anyway.
I took the man’s hand and noticed that it was strong and callused like a man who worked with his hands.
I asked the sons was their dad did and they all started relating stories about his love of farming and then told funny stories about how their dad reacted to their antics growing up.
Pretty soon, all the sons were laughing and telling their dad how much they appreciated him as I quietly left at the end of my shift.
When I returned the next day for my next shift, I was not surprised to learn that the dad had peacefully died during the night with his sons at his side. But I was surprised to find that one of the sons stayed until I came back and wanted to talk to me.
“Lady, you were right! He did hear us!” he told me.
It turned out that the sons had continued talking to their dad after I left and when they said they were ready to leave, their dad opened his eyes, looked at them, smiled and then closed his eyes and peacefully died.
What a wonderful memory for his sons-and me!
Whether we are renewing our driver’s licenses, watching the TV news or just picking up a newspaper, it’s impossible to miss the campaign to persuade us to sign an organ donation card such as this one. We see story after story about how grieving relatives have been comforted by donating a loved one’s organs after a tragic death, and how grateful the people are whose lives have been changed by the “gift of life”.
But are ethical lines being crossed in the zeal to obtain organs to transplant?
While most people presume that organs can be removed and transplanted only after “all efforts to save your life have been exhausted” and brain death has been determined, that presumption is no longer necessarily true.
Now, organ donation can occur with a person who is in a coma and considered close to death but who does not meet the criteria for brain death. In those cases, a organ donor card or relatives who have agreed to withdraw a ventilator (a machine that supports or maintains breathing) and have the person’s organs removed for transplant if or when when the heartbeat stops. This was called DCD or donation after cardiac death until some doctors found that the stopped heart could be successfully restarted it in the patient receiving the transplant!
Now, that ethically questionable procedure is called donation after circulatory death (also DCD) since circulation stops when the heart stops.
If circulation does not stop within 60 minutes, the organs are deemed to be too damaged for transplant and the patient dies without donating organs.
IT GETS WORSE
Last month a September 29, 2022 article in Medpage titled “No Brain Death? No Problem. New Organ Transplant Protocol Stirs Debate-Is it ethical to pull the plug in patients who aren’t brain dead, then restart their hearts?” reported on a new procedure to get more organs:
“With little attention or debate, transplant surgeons across the country are experimenting with a kind of partial resurrection: They’re allowing terminal patients to die, then restarting their hearts while clamping off blood flow to their brains. The procedure allows the surgeons to inspect and remove organs from warm bodies with heartbeats.” (Emphasis added)
The article also said that this new procedure is being criticized by doctors like Dr. Wes Ely and the American College of Physicians that warned the procedure raises “profound ethical questions regarding determination of death, respect for patients, and the ethical obligation to do what is best.”
MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH
Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the innovation of brain death organ transplantation. We trusted the experts and the prevailing medical ethic of the utmost respect for every human life.
However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for up to 10 minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.
I was told that greater minds than mine had it all figured out so I shouldn’t worry.
It was awhile before I realized that these doctors did not have the answers themselves and that my questions were valid.
I also discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were cases of “brain dead” people like Jahi McMath living and maturing for years after a diagnosis of brain death or even recovering like Zack Dunlap.
If the legal definition of brain death is truly “irreversible cessation of all functions of the entire brain, including the brain stem”, these cases would seem to be impossible.
PRESUMED CONSENT AND LAW
Another problem is “presumed consent” which is the assumption that everyone is willing to donate his/her organs unless there is evidence that they would not want to donate. Illinois narrowly avoided a “presumed consent” statute a few years ago where people who didn’t want to donate had to file an opt out document with the Secretary of State.
Some countries already have “presumed consent” laws, most recently in England that states:
“it will be considered that you agree to become an organ donor when you die, if:
- you are over 18;
- you have not opted out;
- you are not in an excluded group”
Even more horrifying, there have also been proposals to even link organ donation and assisted suicide as “a potential solution to the organ scarcity problem”. Countries like Belgium and the Netherlands already allow this.
CONCLUSION
Organ donation can truly be “the gift of life”, and innovations such as adult stem cells and the donation of a kidney or part of a liver by a living person generally pose no ethical problems and hold much promise to increasingly meet the needs of people with failing organs. I have a grandson whose life was saved by a stem cell transplant and another relative who has had 2 kidney transplants.
Personally, I have offered to be a living donor for friends and my family knows that I am willing to donate tissues like bone, corneas, skin, etc. that can be donated after natural death.
Everyone can make his or her own decision about organ donation but it is crucial that we all have the necessary information to make an informed decision..
My first volunteer work was feeding elderly patients in a local nursing home when I was 13. Although I was nervous at first, I came to love being with these elderly patients and especially hearing their stories.
After I graduated from nursing school in 1969, I took care of many elderly patients in ICU, oncology, kidney dialysis and home health/hospice as well as my own relatives and friends. I learned a lot from all these people about the special needs of older patients and have written about them in my blogs.
In 2018, I wrote a blog titled “Don’t Write Off the Elderly” about “Melissa” (not her real name), my friend who is also the mother of one of my best friends and who died recently at the age of 99 years, 9 months and 5 days.
Melissa had wonderful care from her family, caregivers and spiritual support but she also had some difficult situations with the healthcare system. Thankfully, these situations were resolved and Melissa died peacefully and comfortably in her own home, as she had hoped.
So I was delighted to see this wonderful article at ‘Medical Methuselahs’: Treating the Growing Population of Centenarians (medscape.com) from the website Medscape for healthcare professionals that can help not only doctors and nurses but also older people and their friends and families.
Although this article is mainly about people who reach 100, it has observations and tips that can help other older people over 65. And as an older person myself, I really appreciate the positive outlook in this article.
Although the article is longer than most other Medscape articles, it is well worth reading for anyone who is older or who has elderly friends and/or relatives.
Here are some excerpts and all emphasis is mine:
1.“Priya Goel, MD is a New York doctor who works for a national home healthcare company that primarily serves people older than 65. Dr. Goel has observed that although some of the ultra-aged live
in nursing homes, many continue to live independently. They require both routine and acute medical care.
Dr. Goel urges her colleagues not to stereotype patients on the basis of age, saying that:
“You have to consider their functional and cognitive abilities, their ability to understand disease processes and make decisions for themselves… Age is just one factor in the grand scheme of things.” Dr. Goel visits her patients aged 65 and up in their homes to provide herself with insights into how well they’re doing, including the safety of their environments and the depth of their social networks.
2. Geriatrician Thomas Perls, MD says “”People can age so very differently from one another” and agrees that “that healthcare providers and the lay public should not make assumptions on the basis of age alone as to how a person is doing. People can age so very differently from one another,” he said and that:
“Up to about age 90, the vast majority of those differences are determined by our health behaviors, such as smoking, alcohol use, exercise, sleep, the effect of our diets on weight, and access to good healthcare, including regular screening for problems such as high blood pressure, diabetes, and cancer. “People who are able to do everything right generally add healthy years to their lives, while those who do not have shorter life expectancies and longer periods of chronic diseases,” Perls said.
“Paying diligent attention to these behaviors over the long run can have a huge payoff” and
“Centenarians are the antithesis of the misguided belief that the older you get, the sicker you get. Quite the opposite occurs. For Perls, “the older you get, the healthier you’ve been.“
3. “We have to be very cognizant of what we call a typical presentation of disease or illness and that a very subtle change in an older adult can signal a serious infection or illness,” Baker said. “If your patient has a high fever, that is a potential problem.”
The average temperature of an older adult is lower than the accepted 98.6° F, and their body’s response to an infection is slow to exhibit an increase in temperature, Baker said. “When treating centenarians, clinicians must be cognizant of other subtle signs of infection, such as decreased appetite or change in mentation,” she cautioned.
A decline in appetite or insomnia may be a subtle sign that these patients need to be evaluated, she added.”
4. Environmental changes, such as moving a patient to a new room in a hospital setting, can trigger an acute mental status change, such as delirium, she added. Helping older patients feel in control as much as possible is important.
“You want to make sure you’re orienting them to the time of day. Make sure they get up at the same time, go to bed at the same time, have clocks and calendars present ― just making sure that they feel like they’re still in control of their body and their day,” she said.”
6. And, in a very important observation:
“Dr. Flomenbaum, a pioneer in geriatric emergency medicine, says physicians need to be aware that centenarians and other very old patients don’t present the same way as younger adults.He began to notice more than 20 years ago that every night, patients would turn up in his ED who were in their late 90s into their 100s. Some would come in with what their children identified as sudden-onset dementia ― they didn’t know their own names and couldn’t identify their kids. They didn’t know the time or day. Flomenbaum said the children often asked whether their parents should enter a nursing home.
“And I’d say, ‘Not so fast. Well, let’s take a look at this.’ You don’t develop that kind of dementia overnight. It usually takes a while,” he said.”
Dr. Flomenbaum also said:
“The decline in hearing and vision can lead to a misdiagnosis of cognitive impairment because the patients are not able to hear what you’re asking them. “It’s really important that the person can hear you ― whether you use an amplifying device or they have hearing aids, that’s critical,” he said. “You just have to be a good doctor.”Often the physical toll of aging exacerbates social difficulties. Poor hearing, for example, can accelerate cognitive impairment and cause people to interact less often, and less meaningfully, with their environment. For some, wearing hearing aids seems demeaning ― until they hear what they’ve been missing.
I get them to wear their hearing aids and, lo and behold, they’re a whole new person because they’re now able to take in their environment and interact with others,” Perls said.”Dr. Flomenbaum said alcohol abuse and drug reactions can cause delirium, which, unlike dementia, is potentially reversible. Yet many physicians cannot reliably differentiate between dementia and delirium, he added.”
7. The geriatric specialists talk about the lessons they’ve learned and the gratification they get from caring for centenarians.
“I have come to realize the importance of family, of having a close circle, whether that’s through friends or neighbors,” Goel said. “This work is very rewarding because, if it wasn’t for homebound organizations, how would these people get care or get access to care?”
For Baker, a joy of the job is hearing centenarians share their life stories.”
CONCLUSION
In helping to care for many elderly people over many decades, I can attest to the wisdom and hope of these experts.
Aging itself is not a terminal disease and it can be a wonderful time to spend more time with loved ones and reflect on how much we have learned and can still enjoy in every stage of life!
In his excellent July 10, 2022 blog, Alex Schadenberg, chair of the International Euthanasia Prevention Coalition, reveals that now “Canada’s medical assistance in dying (Maid) law is the most permissive euthanasia legislation in the world”.
He says “Canada’s MAiD law currently allows suicide facilitation for persons with disabilities and is on track to expand in March 2023 to those living with mental illness. “ (Emphasis added)
How did assisted suicide/euthanasia laws get so far and so fast down the proverbial “slippery slope”?
In my December, 2016 blog “Pain and ‘Choice’”, I wrote about how I saw the warning signs when I was a new nurse in 1969.
Here is my blog:
PAIN AND “CHOICE”
It was 1969 and I was fresh out of nursing school when I was assigned to a patient I will call “Jenny” who was thirty-two years old and imminently dying of cancer. She was curled up in her bed, sobbing in pain and even moaned “just kill me.” The small dose of Demerol I injected into her almost non-existent buttocks every four hours “as needed” was not helping. I reassured Jenny that I was immediately calling the doctor and we would get her more comfortable.
However, I was shocked when the doctor said no to increasing or changing her medication. He said that he didn’t want her to get addicted! I told him exactly what Jenny said and also that she was obviously very close to death so addiction would not be a problem. The doctor repeated his no and hung up on me.
I went to my head nurse and told her what happened, but she told me I had to follow the doctor’s order. Eventually, I went up the chain of command to the assistant director of nursing and finally the Chief of the Medical Staff. The verdict came down and I was threatened with immediate termination if I gave the next dose of Demerol even a few minutes early.
I refused to abandon Jenny so for the next two days before she died, I spent my time after my shift sitting with her for hours until she fell asleep. I gave her whatever food or drink she wanted. I stroked her back, held her hand and told stories and jokes. I asked her about her life. I did everything I could think of to distract her from her pain and make her feel better. It seemed to help, although not enough for me. I cried for Jenny all the way home.
And I was angry. I resolved that I would never watch a patient needlessly suffer like that again.
So, I educated myself by reading everything I could about pain medicine and side effects. I also pestered doctors who were great at pain control to teach me about the management, precautions, and rationale of effective pain management. I used that knowledge to advocate and help manage my patients’ pain as well as educating others.
I was delighted to see pain management become a major priority in healthcare and even called “the fifth vital sign” to be evaluated on every patient. I saw new developments like nerve blocks, new drugs, and regimens to control pain and other techniques evolve as well as other measures to control symptoms like nausea, breathlessness, and anxiety. Now we also have nutritional, psychological, and other support for people with terminal illnesses and their families.
Best of all was that I never again saw another patient suffer like Jenny despite my working in areas such as ICU, oncology (cancer) and hospice.
TWENTY-FOUR YEARS LATER
When my oldest daughter was 14, she attended a public high school where the science teacher unexpectedly started praising the infamous Dr. Jack Kevorkian and his public campaign for legalized assisted suicide and euthanasia. Kevorkian’s first reported victim was Janet Adkins, a 54 year old woman with Alzheimer’s in no reported physical pain who was hooked up to a “death machine” in the back of a rusty van. Mrs. Adkins was just the first of as many as 130 Kevorkian victims, many if not most of whom were later found to have no terminal illness. Kevorkian escaped prosecution-even after he harvested a victim’s organs and offered them for transplant-until the TV show 60 Minutes aired Kevorkian’s videotape showing him giving a lethal injection to a man with ALS (Lou Gehrig’s disease). Shockingly, Kevorkian served only 8 years in prison before he was paroled and eventually became a media celebrity peddling assisted suicide and euthanasia.
My daughter, who never before showed any interest in my speaking and writing on the topic of assisted suicide, now stood up and peppered her teacher with facts about Kevorkian. The teacher asked her where she learned her information and she answered, “From my mom who is a cancer nurse”.
Sarcastically, he responded “So your mother wants to watch people suffer?” My daughter responded “No, my mother just refuses to kill her patients!” End of discussion.
CONCLUSION
But not the end of the story. Tragically, we now have legalized assisted suicide in several states and serious efforts to expand it to include people without physical pain but with conditions like Alzheimer’s, mental illness or other psychological distress as well as even children.
As Wesley Smith recently and astutely observed:
“Moreover, the statistics from Oregon and elsewhere show that very few people commit assisted suicide due to physical suffering. Rather, the issues are predominately existential, such as fears of being a burden or losing dignity
The public is being duped by groups like Compassion and Choices that campaign for legalized assisted suicide on the alleged basis of strict criteria for mentally competent, terminally ill adults in unbearable physical pain to freely choose physician-assisted suicide with (unenforceable) “safeguards”.
The emerging situation throughout the world is more like Kevorkian’s dream of unfettered and universal access to medical termination of the lives of “expendable” people. How much easier is that when people with expensive mental health problems, serious illnesses or disabilities can be encouraged to “choose” to be killed?
I have written blogs about my elderly friend “Melissa” (not her real name) and some of her health care experiences to explain some of the pitfalls elderly people may encounter when they get seriously ill.
I have known “Melissa” for decades and, with her permission, she agreed to my writing about her in my blogs. She was thrilled to hear about my 2018 blog “Covid 19 and Nursing Homes” and my 2020 blog “Don’t Write Off the Elderly”.
She even told me she like the name “Melissa” better than her real name!
I first met Melissa when she was in her 80s through her daughter who is also one of my favorite people.
Both were involved in planning the beautiful wedding reception at my home when my second husband and I were married in 2008. Melissa even remembered my favorite flower and made beautiful centerpieces with them for every table.
After Melissa could no longer drive, I took her to Mass at her parish and then to Chic-Fil-A on Fridays for breakfast with her daily Mass friends until she couldn’t physically make it.
I then visited her on Fridays and was inspired when she accepted hospice care and the care of her family with grace and gratitude.
Eventually, she spent her last days in a bed near a large window where she could watch the birds at her birdfeeder and have some of her beloved flowers at her bedside.
During that time, Melissa and I laughed a lot, prayed together, chatted about current events and family, and watched funny videos and old episodes of TV shows she enjoyed like “Barney Miller” and “Bewitched”.
She also told me many of the fascinating stories behind the pictures of her and her family covering the walls of her room.
Melissa died peacefully on May 6, 2022, at her home at the age of 99 years, 9 months and 5 days, lovingly cared for by her family and great home health and hospice providers.
A devout Catholic, Melissa was unafraid of death and knew she would meet her late husband and her son who died at age 4. Another son unexpectedly died at 56, shortly before Melissa.
Melissa generously donated her body to Logan College to help future doctors with their education.
After her funeral Mass, her family had a Celebration of Life event with pictures and stories about her life. There was a lot of laughter and some tears as we all talked about Melissa and what she meant to us.
CONCLUSION
Melissa and her family are an inspiration to me and an example of how to have a good death, something that seems impossible to many people.
I visited her the day she died peacefully and comfortably, but not awake.
She died just as she hoped.
We will miss you Melissa but we will never forget you!
Rest in peace.
nancyvalko 
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