Caring for an Elderly Relative who Wants to Die

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, 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

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

.

Think the Political and Cultural Divisions in Our Country are Bad? The Divisions in Medical Ethics Could Cost Your or a Loved One’s Life!

I wanted to be a nurse since I was 5. I was drawn to nursing not only because I wanted to help people but also because medical ethics standards were so high, especially in contrast to some of the corrupt business practices that I saw.

I graduated from a Catholic nursing school in 1969 and spent the next 50 years working mostly in intensive care but also in home health and hospice, oncology (cancer), kidney dialysis, volunteer work and on ethics committees.

I first noticed the change in medical ethics when the US Supreme Court’s Roe v. Wade decision in 1973 legalized abortion for the first three months of pregnancy. I was working in intensive care at the time and found that my fellow medical professionals who supported the abortion decision angrily rebuked those of us who were shocked that the first rule of medical ethics we were taught-First, Do No Harm-was eroding.

Then in 1982, my doctor husband and I were shocked by the Baby Doe case where the parents received a judge’s approval to let their newborn son with Down Syndrome die instead of repairing an easily correctable hole between the tube that leads from the throat to the stomach and the  tube that leads from the throat to the windpipe and lungs.  While lawyers were appealing his case and many parents (including my husband and me) wanted to adopt Baby Doe, the newborn starved and dehydrated to death without the desperately needed surgical repair.

My husband asked “What has happened to medical ethics??” but we both knew the answer: babies with Down Syndrome are often unwanted and aborted.

Five months after Baby Doe died, our third child Karen was born with Down Syndrome and a reparable heart defect but the heart doctor gave us a choice to “let” our baby die without surgery. We refused but my former trust in the medical system was shattered.

After I suddenly became a single parent in 1988, I had to return to a paid nursing job to support my three children but found a drastically different medical ethics system.

I found that during the 1970s, medical ethics began to evolve into the newer “bioethics”, even in Catholic hospitals.

This new bioethics has essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”) Emphasis added.

Unfortunately, those principles are malleable and then used to justify actions and laws that would have been unthinkable when I graduated from nursing school. That bioethics mindset changed not only medical and nursing education but also the principles that informed our work.

Even the Hippocratic Oath, the oldest and most widely known treatise on medical ethics that forbade actions such as abortion and euthanasia that medical students routinely took upon graduation, has now been revised or dropped at many medical schools.

SOME MEDICAL ETHICS DIVISIONS THAT CAN COST YOU OR A LOVED ONE’S LIFE

Abortion

The American Medical Association, the American Congress of Obstetricians and Gynecologists and the American Nurses Association and other healthcare organization that used to condemn abortion are now supporting “abortion rights”.

Abortion on demand and taxpayer-funded has now been deemed a “civil right” by Planned Parenthood and many Democratic politicians throughout pregnancy to birth and even beyond. Alternatives to abortion such as free pregnancy tests, counseling, ultrasounds, maternity and baby clothes, diapers, car seats, bassinets, etc. are not options at Planned Parenthood but rather at non-profit crisis pregnancy centers.

As a parent of an unwed teenage daughter, I support these services and give thanks for my now 22 year old granddaughter.

Assisted suicide/euthanasia

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

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

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote a 1969 article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added).

By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law and in 1990, The US Congress passed the Patient Self-Determination Act that requires information to be given to patients about their rights under state laws governing advance directives (commonly called “living wills), including the right to accept or refuse medical or surgical treatments.

Now, 8 states and the District of Columbia have assisted suicide laws and Compassion and Choices, the largest advocacy group for medically assisted suicide, is using the Covid 19 pandemic to push for telehealth (the provision of healthcare remotely by means of telecommunications) for medically assisted suicide.

Infanticide

In my nursing school 50 years ago, we were taught medical ethics and one example used was the case of a newborn with Down Syndrome who needed life-saving surgery but whose parents refused, choosing to let him die. We were told that the law would protect such children from medical discrimination-even by the parents.

Now we have cases like Charlie Gard and Simon Crosier and others whose parents chose life for their babies with disabilities but were thwarted by doctors and courts.

Organ donation

When I started working in an ICU in 1971, I had questions about the brain death diagnosis for organ harvesting but was told not to worry because there were strict rules.

However and over subsequent years, I discovered that the rules for organ donation have been changing from brain death to other criteria including severe brain injury. There have even been proposals for “presumed consent” state laws where people would have to register an “opt-out” or be automatically presumed to consent to organ donation.

I do not have an organ donor card nor encourage others to sign one. Instead, I once offered to give a friend one of my kidneys as a living donor. Although I was not able to donate then, my family knows that I am willing to donate tissues like corneas, bone, etc. that can be ethically donated after natural death and will only agree to that donation

Conscience rights

Doctors and nurses used to be protected when asserting their conscience rights when refusing to deliberately hastening or causing a patient’s death.

Now, even that protection-which protects both patients and medical professionals-is under attack.

I discovered this personally several years ago when I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who didn’t stop breathing after his ventilator was removed.

CONCLUSION

The bottom line is that everyone must remain vigilant when they or a loved one becomes seriously ill, regardless of the hospital or institution. It is also important not to be afraid to ask questions.

There are also non-denominational, non-profit groups like the National Association of Pro-life Nurses, the Healthcare Advocacy and Leadership Organization and state and national pro-life organizations that have much useful information and resources for patients, families and the public.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us. We need to demand transparency and the highest ethical standards from our doctors and healthcare system before they can earn our trust.

And without a change in laws, policies and attitudes promoting deliberate death as an answer to human suffering, those of us medical professionals who believe we should never cause or hasten anyone’s death may become an endangered species-as well as our medically vulnerable patients.

Euthanasia: Canada, Conscience and Coercion

A January 22, 2020 CNA article titled Perform Euthanasia or Lose Government Funding”, Canadian Hospice Told” revealed that a secular Canadian hospice was at risk of losing its government funding over its refusal to euthanize patients who request an “assisted death.”

How could this happen?

First of all, Canadian health care (known to Canadians as “medicare”) is 69% publicly funded for “medically necessary” care administered by the 13 provinces and territories with different rules. 31% of Canadian health care costs are paid by the private sector for services not covered or only partially covered by medicare, such as prescription drugs, dentistry and optometry.

The problems started when the Canadian Supreme Court legalized MAiD (Medical Assitance in Dying” in 2015.

Soon after, the province of Quebec drew up guidelines for MAiD and made “euthanasia kits” for lethal injections available to every doctor in Quebec. Now most MAiD deaths in Canada are done by lethal injection.

In September 2016, about three months after euthanasia became legal in Canada, British Columbia’s Fraser Health Authority ( the publicly-funded organization responsible for administering healthcare in British Columbia) introduced a new policy which required all hospices receiving more than 50% of provincial funding for their beds to offer euthanasia to their residents. However, the hospice was operated by the non-profit organization the Delta Hospice Society, which is opposed to Canada’s MAiD

One doctor said that there are “‘strong lobbies’ backing this new effort to expand MAiD into additional institutions which receive provincial funding, including faith-based hospitals or hospices.(Emphasis added)

HOW ONE CATHOLIC HEALTH CARE FACILITY RESPONDED TO MAiD

Unfortunately and in 2018, the Catholic Covenant Health system in the province of Alberta, Canada released a revised MAID policy:

“after consultations with more than 100 individuals and groups including doctors, Catholic bishops, Alberta Health Services, the Alberta government, patient advisers, families, ethicists and community members.
Under the policy, witnessing and signing of legal documents and assessments of eligibility can take place on Covenant Health sites. Patients deemed eligible for MAID would still be transferred to other facilities.” (Emphasis added)

A current check of the Covenant website on MAiD shows no change in policy.

THE CANADIAN “SLIPPERY SLOPE” ALSO CONTINUES

In January, 2020 the Halifax Group, published “MAiD Legislation at a Crossroads: Persons with Mental Disorders as Their Sole Underlying Medical Condition” that supported MAiD not only for non-dying persons ” experiencing enduring, intolerable and irremediable suffering from physical conditions” but also for persons who have “a mental illness as their sole underlying medical condition.” (Emphasis added)

This month, The Expert Advisory Group responded to the Halifax group, warning that the Canadian medical suicide law is the “most permissive in the world”.

THE EFFECT OF MAiD ON DOCTORS AND NURSES

Last year, The Canadian Catholic Nurses joined the National Association of Catholic Nurses in opposing the American Nurses Association’s draft position for neutrality on physician-assisted suicide (unfortunately later approved) and gave a chilling look at what may be our future if legalized assisted suicide is not opposed:

“Our association formed in 2018 primarily in response to Canadian nurses’ moral distress regarding the nation-wide legalization of medically induced death.

Professional associations and licensing bodies across Canada endorsed the legal changes, requiring conscientious objectors to participate in “Medical Assistance in Dying” by “effective referral” to facilitate access at the patient’s request. Faith-based health care facilities are pressured to participate. Nurse practitioners are trained and qualified to prescribe and administer lethal doses of medication to patients that they or others deem eligible for euthanasia.”

and

The Canadian experience with assisted suicide and euthanasia provides evidence for your continued resistance to the practice.

Unlike Oregon, Canada has not experienced a growth in palliative care along with the rapid expansion of induced death. Instead, we experience ongoing demands for access to lethal injections for new categories of patients, including “mature minors;” those who write advanced directives; and those whose mental illness is the sole condition underlying their request.”

A 2018 study “Medical assistance in dying (MAiD): Canadian nurses’ experiences” stated that:

“It is vital to understand how MAiD is influencing nurses in the Canadian context to ensure a smooth transition of this end‐of‐life care option across settings and communities. ” (Emphasis added)

The study acknowledges some nurses’ “moral distress” but describes “how participating in, or declining to participate in MAiD is shaping the participants’ perceptions of nursing as a profession“. The authors suggest promoting concepts like “Providing holistic care without judgment, Advocating choice, Supporting a good death” to positively reinforce  that MAiD was “not a significant departure from their professional goals”. (Emphasis added)

(Ironically, 77% doctors in Laval, Canada refused to provide MAiD 18 months after legalization with the most common reason that MAiD was “too much of an emotional burden to bear”.)

CONCLUSION

Last year it was reported that More than one in every 100 deaths in Canada is administered by a doctor but that even this number is likely higher because parts of Canada currently do not report such deaths.

The numbers are also likely to get higher as the Canadian euthanasia laws expand the eligibility criteria and health care professionals worry about losing their jobs if they refuse to participate.

Unfortunately, most of the US mainstream media ignores the Canadian euthanasia experience while approvingly reporting on the increasing number of US states legalizing physician-assisted suicide.

What all of us need to understand is that the legalized killing of any patient ultimately leads to the destruction not only of the patient but also of a trustworthy health care system and a truly safe and civilized society.

Are We Witnessing the Coming Extinction of Conscience Rights?

Last month, Wesley Smith, the well-known writer and lawyer who opposes assisted suicide and abortion, wrote an article titled “Bioethicist Wants to Morally Cleanse Medical Schools”  about plans to weed out pro-life potential doctors and nurses from even entering medical and nursing schools:

“Make no mistake. Schuklenk and his ilk — such as the adamant opponent of medical conscience, Ezekiel Emanuel — are deadly serious about crushing all dissent within the medical professions to emerging cultural paradigms, and plan to morally cleanse the ranks of doctors, nurses, pharmacists, and institutions of all  wrong thinkers, particularly of the religious and pro-life kind.”

As Wesley warns after speaking with such prospective medical and nursing students, “such culling already occurs outside of official policy”.

CONSCIENCE RIGHTS FOR HEALTH CARE INSTITUTIONS

Now health care institutions that forbid their employees from participating in abortion and euthanasia are at risk.

As an October 29, 2019 article in the Journal of the American Medical Association (JAMA) titled “Colorado End-of-Life Options Act-A Clash of Organizational and Individual Conscience” explains, a new court case may result in conscience rights being legally upheld when a doctor agrees to help a patient commit assisted suicide against a religious healthcare institution’s policy.

This came about when the Colorado legislature could not pass a physician-assisted suicide in 2014 and 2015 but a new, problematic referendum was introduced and passed by Colorado voters in 2016.

While hospitals and clinics in other states with assisted suicide laws are allowed to prohibit their employees from participating, the Colorado, the referendum added a little-noticed provision in the 2016 Colorado referendum that stated:

“A health care facility may prohibit a physician employed or under contract with the facility from prescribing medication to an individual who intends to use the medication on the facility’s premises. The facility must provide advance written notice of its policy to the physician and its patients. A health care facility may not discipline a physician, nurse, pharmacist, or other person for actions taken in good faith or for refusing to participate in any way.” (Emphasis added)

As the JAMA article notes,This provision virtually guaranteed the Colorado law would eventually be challenged”.

This set up the current case Mahoney et al v. Centura Health Corporation” involving Neil Mahoney, a Colorado man with advanced cancer, who wanted physician-assisted suicide and found geriatrician Barbara Morris, MD. Dr. Morris was willing to write the lethal overdose prescription. However, the religiously based Centura Health System where she was employed forbade participation in assisted suicide. Mr. Mahoney and Dr. Morris filed a lawsuit on August 21, 2019 and the doctor was fired on August 26 for violating the ethical directives provided for Catholic health care services.

The article concludes that:

“the case seems destined to have a potentially significant effect on national policy. If the courts rule that the Constitution allows hospitals to exert control over individual physicians’ claims of professional conscience, it will be a victory for corporate medicine.

But if the state law is upheld, the case could establish that physicians’ professional conscience claims hold or take precedence over the ethical and religious directives of religiously affiliated hospitals. It is possible that at least some religiously affiliated health systems might rather close than allow that outcome.” (All emphasis added)

CONCLUSION

As Wesley Smith writes, eliminating pro-life health care providers and institutions is  becoming part of an utilitarian agenda in the bioethics movement where “legalized euthanasia, free and unfettered abortion at all stages of gestation, infanticide, eugenic embryo engineering, invidious forms of health-care rationing based on ‘quality of life,’ etc., are all part of the mainstream bioethics agenda, or at the very least, are seen as respectable advocacy memes.”

With the current support of a predominantly sympathetic mainstream media, well-funded and politically active groups like Planned Parenthood and Compassion&Choices are also putting pro-life health care providers and their supportive institutions in grave danger of becoming an endangered species in law, politics and health care.

If this happens, our health care system will radically change-especially for the unborn, the elderly and people with disabilities.

When dedicated and compassionate people are denied entry into the health care professions because they refuse to deliberately end lives, harassed and/or fired when they refuse to participate in a deliberate death decisions and religiously based healthcare institutions are forced by law to allow lives to be ended by “choice” or close their doors, will any of us be able to trust our healthcare system when we need it the most?

We need to educate ourselves and the public before it’s too late.

Accidental Oversight or Deliberate Omission in new Palliative Care and Hospice Education and Training Act?

With the enthusiastic support of Compassion and Choices (which promotes legalizing assisted suicide throughout the US), the first Palliative Care and Hospice Education and Training Act (PCHETA) was introduced in Congress in 2016  to allow millions of dollars in federal grants to, in the bill’s words, “increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.”

While palliative care has been traditionally defined as “compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness” and hospice care as “compassionate comfort care (as opposed to curative care) for people facing a terminal illness with a prognosis of six months or less, based on their physician’s estimate”, the PCHETA bill may radically change such care.

I started writing  about the potential dangers with the PCHETA bill in Congress in 2018 when it was passed by the US House of Representatives and sent to a Senate Committee for approval. The PCHETA stalled there, thought to be at least partially due to concerns by some U.S. senators about the bill’s potential problems with hastening of death and legalized assisted suicide  despite a “clarification” in the bill that that “None of the funds made available under this Act (or an amendment made by this Act) may be used to provide, promote, or provide training with regard to any item or service for which Federal funding is unavailable under section 3 of Public Law 105–12 (42 U.S.C. 14402)” such as assisted suicide, euthanasia or mercy killing.

So after the bill stalled, a second “clarification” was added to the Senate bill (now S. 2080) in July, 2019 that states “Sec. 5(b) ADDITIONAL CLARIFICATION.—As used in this Act (or an amendment made by this Act), palliative care and hospice shall not be furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason.” (Emphasis added)

This second clarification is critical because, as the US Conference of Catholic Bishops representative Greg Schleppenbach, has written:

“This provision is important because for the first time anywhere in federal law or regulations it explicitly states that palliative and hospice care cannot be furnished for the purpose of causing or assisting in causing death.  These protective provisions were added as a condition of our support for this bill.” (Emphasis added)

But on October 28, 2019, the House PCHETA (HR 647) bill that does NOT contain the second clarification was reintroduced and quickly passed by the US House of Representatives on a voice vote  and sent to the Senate for approval. That bill is now in the Senate Committee on Health, Education, Labor, and Pensions. (Senators can now be contacted by even email.)

OPPOSITION TO THE PCHETA BILL CONTINUES

Even with the second clarification, many groups continue to voice concern about the PCHETA bill because many of us nurses and doctors are seeing unethical practices such as assisted suicide, terminal sedation, voluntary stopping of eating, drinking (VSED) and even spoon feeding, etc. being used to cause or hasten death but often called palliative or “comfort care” for such patients.

We worry that the Palliative Care and Hospice Education and Training Act (2019) can allow federal funding to teach and even institutionalize such unethical practices without sufficient oversight, safeguards or penalties.

Julie Grimstad of the Healthcare Advocacy and Leadership Organization (HALO) also voices concerns about funding new palliative care and hospice programs, citing the 2019 Department of Health and Human Services Office of Inspector General report titled Vulnerabilities in Hospice” that documented serious problems.

She also cites Dr. Farr A. Curlin, a palliative medicine specialist at Duke University, who warns that:

“When the goal of HPM (Hospice and Palliative Medicine) shifts from helping patients who are dying to helping patients die, practices that render patients unconscious or hasten their death no longer seem to be last-resort options,” [emphasis added]

HALO is joined by other groups who officially oppose PCHETA S.2080 such as the National Association of Pro-life Nurses  and the Euthanasia Prevention Coalition USA

CONCLUSION

Whether or not the omission of the second clarification in the bill sent to the Senate was intentional, the omission validates the genuine concern many of us have that the traditional end of life care ethic to neither hasten nor postpone dying is rapidly being replaced by “quality of life” judgments, economic concerns and patient “choice” to die.

Here is What Sara Buscher Wrote to a Senator about the PCHETA

I have written before about the Palliative Care and Hospice Education and Training Act (PCHETA) that has now been reintroduced in 2019 but today, I have a guest column.

Sara Buscher recently wrote a well-researched letter to her congressman opposing the new PCHETA bill and has given me permission to use it here.

To find your state’s House of Representative member, go to https://www.house.gov/representatives/find-your-representative

To find your US Senator. go to https://www.senate.gov/senators/index.htm and type your state into the search box near the end.

September 8, 2019

Via Email to sean_riley@ronjohnson.senate.gov

The Honorable Ron Johnson

United States Senate

Washington, DC 20510

September 8, 2019

RE:      Palliative Care and Hospice Education Training Act (PCHETA),

  1. 2080 (in Senate HELP Committee) and related bill H.R. 647

Dear Senator Johnson:

I am a retired attorney and C.P.A. who served on Governor Tommy Thompson’s task force on health care costs. I managed employee benefit programs for the State of Wisconsin and later at the University of Wisconsin. As a lawyer in private practice, I advocated for the elderly and disabled. I currently serve on the board of the Euthanasia Prevention Coalition – USA.

I urge you to object to this bill being “hot-lined,” oppose it and vote against it. As one accountant to another, this bill is a rip off. In effect it will help create a second tier of health care where people receive poorer care, and are sometimes euthanized. The bill provides federal funding for palliative care medical education and a public awareness option for “selling” palliative care to patients and their families. Palliative care grew out of and includes hospice care. It provides an earlier pathway to hospice care.

Government Funding is Unneeded

Government funding is not needed. If enacted, the bill will cost the federal government $86 million over the next four years.[1] Palliative care has already spread rapidly.[2] Through 2006, the George Soros’ Open Society Institute and the Robert Wood Johnson Foundation spent more than $200 million to develop and expand palliative care.[3] With philanthropic[4] funding, palliative care has grown to the point that more than 80% of US patients who are hospitalized for serious illness have access to it.[5] Over 2017-19, $40 million is being spent to develop community programs for serious illness.[6]

We know that philanthropic funding did not stop when the bill failed to pass two years ago. During that time, palliative care has continued to expand. If enacted, this bill would replace philanthropic dollars with federal tax dollars. So, this bill would benefit those who want to reshape medicine for the rest of us according to their worldview.

 Elusive Cost Savings

If there are any savings, which is questionable as discussed below, providers would likely keep them. When the government pays a flat fee, like Medicare and Medicaid do for hospitalizations, the providers keep all the savings.[7] For example, if Medicare or Medicaid pays $20,000 per case and the hospital spends only $13,000, thereby saving $7,000, the government still pays $20,000 and provider keeps $7,000. The same is true of all the managed care programs and hospice. Industry proposals would have Medicare pay for palliative care like it does for hospice with a flat daily fee.[8]

I am concerned that palliative care, like its older sister hospice will not live up to its cost savings hype. Palliative care researchers are claiming they can save end of life costs that hospice and advance care planning also claim to be saving. It just isn’t possible to save the same costs (use of Intensive Care Units (ICUs), reducing hospitalizations, and reducing aggressive care at the end of life) more than once.

A study done for the Medicare Payment Advisory Commission (MedPAC) found Medicare hospice benefits have not lowered Medicare costs in the last year of life.[9] According to the consultant, some researchers showed hospice saved money by picking time periods that compared apples to oranges.[10]

Enactment Could Erase Medicare Fraud Recoveries

The HHS Office of Inspector General says hospices are defrauding Medicare of hundreds of millions of dollars by enrolling people who are not terminal and then billing Medicare at the highest rates.[11] Hospices are already using palliative care as a “loss leader” to enroll more patients into hospice earlier.[12] Hospices make more money by enrolling people who are not eligible for hospice as they need less care.[13] As a result, for-profit hospices are the most profitable Medicare-financed health service. Id. They expect palliative care to become as profitable.[14] Competition will drive out small non-profit hospices.[15]

The PCHETA bill could erase Medicare fraud recoveries by extending palliative care including hospice to those with a “serious or life threatening illness,” the definition of which is to be decided after enactment with input from hospice and palliative care insiders (Bill Section 4 creating section 904(c)(3)). If defined in a way that allows end of life hospice-like care to be called palliative care, it would legitimize enrolling the people who are now being fraudulently enrolled in hospice. Medicare spent $9.5 billion on hospice benefits for patients who outlived their terminal prognosis in 2016.[16] Nearly half of hospices are unsure they could pass a government audit, saying their biggest concern is their enrollment of people who are not terminal. Id. So, this bill could benefit those who game the system.

A Government Stamp of Approval May Hoodwink People

Palliative care can start alongside normal medical care and then eventually shift to hospice care without access to normal medical care. The HHS Office of Inspector General (OIG) reported that people were inadequately informed about the consequences of enrolling in hospice and some were placed in hospice completely without their knowledge.[17] In California, the Senior Medicare Patrol reported that elderly people living in their own homes were approached by nurses and sold housekeeping services that turned out to be Medicare hospice enrollment, leaving them without access to their medications and with unpaid medical bills.[18]

A government stamp of approval may lead more people to poor palliative care and in some cases, euthanasia. Last year, the HHS-Office of Inspector General (OIG) reported that hospice enrollees were receiving poor care.[19] More recently, HHS-OIG reported that 80% of hospices had deficiencies that posed risks to beneficiaries, with 20% jeopardizing patients’ health.[20]

Instances of patients being overdosed to unconsciousness until they die (this is called “palliative sedation” or “terminal sedation”) have increased according to Duke University professor Farr Curlin, M.D.:

Many patients and their families don’t trust HPM [Hospice and Palliative Medicine] and are resistant to it.… These individuals tell stories about loved ones who declined slowly over time, fighting the good fight with the support and companionship of their family members and friends. When HPM professionals became involved in their care, their loved ones were put on powerful drugs, became unconscious and unresponsive, and were soon dead. These stories are clearly shared within communities and powerfully shape people’s perceptions of HPM, which many see as a sophisticated and seductive way of getting people to die.[21]

I was involved in a case where a family member authorized pain relief for her sister and was assured the staff would keep her warm in a snugly blanket because she was always cold. Three hours later, she was dead after massive repetitive doses of powerful drugs.

To maximize profits, the director of Novus Health Services regularly directed nurses to make hospice patients “go bye-bye” with overdoses of drugs like morphine.[22] Novus is now facing a $60 million Medicare fraud indictment.[23]

Clinical practices in palliative medicine regularly result in shortening lives.[24] In one study, 39% of physicians and nurses said they intended to shorten survival with medications and treatment withdrawals.[25] A survey of over 800 hospice and palliative care physicians revealed 45% would sedate patients who were not actively dying to unconsciousness and then withhold food and fluids until they died.[26] One-fourth of them said it did not matter to them how long the patient had to live. Id.

I hope you will do everything you can to kill this bill.

Sincerely,

Sara Buscher

[1] https://www.cbo.gov/publication/54309

[2] https://www.medscape.com/viewarticle/892289

[3] Palliative Care Grantmaking Snapshot Report 2009 (data up to 2006) at page 4, available at amydwrites.com/yahoo_site_admin/assets/docs/Palliative_Care_Grantmaking_Snapshot_Report.13155115.pdf

[4] “Mr. Soros is now funding a project that focuses on the development of palliative care globally. We help govern­ments develop pain and palliative care initiatives and policies.” https://www.mskcc.org/experience/physicians-at-work/kathleen-foley-work

[5] See note 2.

[6] https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0653 grant from Gordon and Betty Moore Foundation.

[7] J. Brian Cassel, Whose Costs Are Saved When Palliative Care Saves Costs?, Health Affairs Blog Sept. 2014 at https://www.healthaffairs.org/do/10.1377/hblog20140929.041603/full/

[8] See proposals via links at https://www.nationalcoalitionhpc.org/aahpm-pacssi-payment-model-ptac-results-a-win-for-patients-and-families/

[9] Spending in the Last Year of Life and the Impact of Hospice on Medicare Outlays (Updated August 2015), MEDPAC http://www.medpac.gov/docs/default-source/contractor-reports/spending-in-the-last-year-of-life-and-the-impact-of-hospice-on-medicare-outlays-updated-august-2015-.pdf?sfvrsn=0

[10] See note 9 at the Appendix.

[11] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[12] https://hospicenews.com/2019/05/14/study-71-of-u-s-adults-have-never-heard-of-palliative-care/ A loss leader is a service sold below cost to attract more customers who will then buy more profitable services. www.businessdictionary.com/definition/loss-leader.html

[13] For-profit hospices saw profit margins exceed 15 percent in 2012, according to a new report from the Medicare Payment Advisory Commission, known as MedPAC, which advises Congress on health policy. No other Medicare-financed health service was as profitable. https://www.huffpost.com/entry/hospice-report_n_55b1307ee4b0a9b94853fc7a 

The 2016 profit margin was 16.8%. http://www.medpac.gov/docs/default-source/data-book/jun19_databook_entirereport_sec.pdf?sfvrsn=0 at p 190.

[14] See note 12.

[15] hospicenews.com/2019/08/27/confessions-of-a-board-member-small-hospice-non-profits-will-not-survive/

[16] homehealthcarenews.com/2018/10/nearly-half-of-hospice-providers-uncertain-they-would-survive-an-audit/

[17] See note 19.

[18] https://cahealthadvocates.org/beneficiaries-pay-the-price-for-hospice-fraud/

[19] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[20] https://oig.hhs.gov/oei/reports/oei-02-17-00020.asp linking to the complete report.

[21] Farr A. Curlin, MD Hospice and Palliative Medicine’s Attempt at an Art of Dying, ch 4 in Dying in the Twenty-First Century, edited by Lydia Dugdale, MD, MIT Press 2015 at page 48.

[22] https://www.bizjournals.com/dallas/news/2016/03/30/novus-hospice-ceo-directed-nurses-to-overdose.html

[23] https://www.justice.gov/usao-ndtx/pr/sixteen-individuals-charged-60-million-medicare-fraud-scheme

[24] Cohen L, et al., Accusations of Murder and Euthanasia in End of Life Care, J Pall Med 2005.8.1096 at 1102.

[25] See note 24 at 1099.

[26] Plots created by Sahr N, Ph.D from data reported on in Maiser S et al., A Survey of Hospice and Palliative Care Clinicians’ Experiences and Attitudes Regarding the Use of Palliative Sedation, J Pall Med 2017 Sep;20(9):915-92.

The National Association of Pro-life Nurses Statement Opposing the Palliative Care and Hospice Education and Training Act (2019)

The National Association of Pro-life Nurses joins the Euthanasia Prevention Coalition USA and the Healthcare Advocacy and Leadership Organization (HALO) and other organizations in opposing the  Palliative Care and Hospice Education and Training Act (2019) H.R. 647, S.2080.  (HALO has issued an action alert with the contact numbers for legislators on the Senate committee considering this bill.)

As nurses, we strive to care for our seriously ill, disabled and terminally ill patients with compassion and the highest ethical standards. We applaud the medical innovations and supportive care options that can help our patients attain the highest quality of life possible.

However now many of us nurses are now seeing unethical practices such as assisted suicide, terminal sedation (with withdrawal/withholding of food, water and critical medicines), voluntary stopping of eating, drinking and even spoon feeding, etc. used to cause or hasten death but often called palliative, “comfort” or routine hospice care for such patients.

We believe that the Palliative Care and Hospice Education and Training Act (2019) will allow federal funding to teach and institutionalize such unethical practices without sufficient oversight, safeguards or penalties.

For example, the Section 5 Clarifications (p. 21) against federal funding for objectionable practices “furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason” is toothless. Such practices are already  considered acceptable by many influential hospice and palliative care doctors like Dr. Timothy Quill, a board-certified palliative care physician, 2012 president of the American Academy of Hospice and Palliative Medicine and promoter of legalizing physician-assisted suicide and terminal sedation.

It is also disturbing the Compassion and Choice, the largest and best funded organization promoting assisted suicide and other death decisions,  has a mission statement stating:

“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.”

and a “Federal Policy Agenda / 2016 & Beyond”  goal to:

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….” (All emphasis added)

As nurses, we are also very concerned that the Act contains no conscience rights protection for those of us-doctors and nurses alike-who will do anything for our patients except deliberately end their lives or help them kill themselves.

Many of us have already faced threats of termination of employment for refusing to participate in unethical, life-ending practices without support from our nursing organizations like the American Nurses Association that recently dropped their traditional opposition to physician-assisted suicide and voluntary stopping of eating and drinking.

For the sake of protecting our patients, the integrity of our medical and nursing professions as well as our healthcare system, we urge the public and our congressional representatives to oppose this dangerous Act.

 

Marketing Death and Alzheimer’s Disease

An April, 2019 study in the Journal of the American Medical Association titled “Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker” found that  approximately 20% of cognitively normal older adults who had elevated beta-amyloid — a biomarker that is thought to increase the risk of Alzheimer’s disease — said they would consider physician-assisted suicide if they experienced a cognitive decline. Not everyone with amyloid plaques goes on to develop Alzheimer’s disease.

Although no state with legalized physician-assisted suicide currently allows lethal overdoses for people with Alzheimer’s or other dementia, Emily Largent, JD, PhD, RN (one of the authors of the  study) said that:

“Our research helps gauge interest in aid-in-dying among a population at risk for developing Alzheimer’s disease dementia and grappling with what they want the end of life to look like”

And

“Public support for aid-in-dying is growing…Now, we are seeing debates about whether to expand access to aid-in-dying to new populations who aren’t eligible under current laws. That includes people with neurodegenerative diseases like Alzheimer’s disease.”

CHOOSING DEATH

As the US birth rate declines to a 32-year low  while people are living longer, now there are more people older than 65 than younger than 5. This has major economic and cultural implications, especially with diseases such Alzheimer’s that usually affect older people.

Back in 2012, I wrote   about a Nursing Economic$ Summit “How Can We Afford to Die?” that had an 8 point action plan. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directions that also included the caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our  action plan will go for naught”. (Emphasis added).

It should not be a surprise that the latest Oregon physician-assisted suicide report   shows that 79.2% of those people dying by assisted suicide were age 65 or older and most reported concerns such as “loss of autonomy” and “burden on family, friends/caregivers”.

With Alzheimer’s disease routinely portrayed as the worst case scenario at the end of life for a person (and their family), there are now programs to “help” people plan their own end of life care.

Such programs include Death Cafes where “people drink tea, eat cake and discuss death” and the Conversation Project  that is “dedicated to helping people talk about their wishes for end-of-life care”. The Conversation Project was co-founded by journalist Ellen Goodman after years of caring for her mother, who had Alzheimer’s.

Compassion and Choices (the former Hemlock Society) is the largest and best funded organization working for decades to change laws and attitudes about assisted suicide and other deliberate death options. Compassion and Choices now has a contract rider for people in assisted living facilities that:

 “will respect Resident’s end-of-life choices and will not delay, interfere with nor impede any lawful option of treatment or nontreatment freely chosen by Resident or Resident’s authorized healthcare proxy or similar representative, including any of the following end-of-life options” which include:

“Forgoing or directing the withdrawal of life-prolonging treatments

Aggressive pain and/or symptom management, including palliative sedation,

Voluntary refusal of food and fluids with palliative care if needed

Any other option not specifically prohibited by the law of the state in which Facility is located.” (Emphasis added)

CONCLUSION

I have both a professional and personal interest in Alzheimer’s disease.

Having taken care of a mother with Alzheimer’s until her death, I treasure many of the moments I had with her. It is possible to both begin the eventual mourning and still appreciate the special moments that indeed do come. My mom was a very high-strung woman who constantly worried about everything. The Alzheimer’s calmed her down somewhat and especially blunted her anxiety about the presence of a tracheotomy for her thyroid cancer.

One of my favorite memories is sitting on a couch with my mom on one side and my then 2 year-old daughter on the other. Sesame Street was on and I noticed that both Mom and my daughter had exactly the same expression of delight while watching the show. A friend thought that was sad but I found it both sweet and profound that their mental capacities had intersected: One in decline, one in ascension. Perception is everything.

Also, I often took care of Alzheimer’s patients as a nurse and I enjoyed these patients while most of my colleagues just groaned. Even though such patients can be difficult at times, I found that there is usually a funny, sweet person in there who must be cared for with patience and sensitivity. I found taking care of people with Alzheimer’s very rewarding.

And although I might be at a higher risk of developing Alzheimer’s disease myself because of my mother, I won’t be taking a test for biomarkers to try to predict the future.

Instead, I will spend my time living the best life I can and hopefully helping others. I believe that life is too  precious to spend time worrying about things that might happen.

Press Release: The National Association of Pro-life Nurses Condemns the American Nurses Association Decision to Drop Its Long-standing Opposition to Assisted Suicide

In June 2019, the American Medical Association (AMA) House of Delegates decisively approved reaffirming the AMA’s long-standing policy opposing physician-assisted suicide despite enormous pressure from assisted suicide supporters and groups like Compassion and Choices as well as some other professional associations to change its position to “neutrality”.

But a few weeks later, the American Nurses Association (ANA) dropped its long-standing policy opposing physician-assisted suicide. Instead its’ new “The Nurse’s Role When a Patient Requests Medical Aid in Dying (aka physician-assisted suicide)” insists that it is really about “high-quality, compassionate, holistic and patient-center care, including end-of-life care”.

As the new position states, “A nurse’s ethical response to a patient’s inquiry about medical aid in dying is not based on the intention to end life. Rather, it is a response to the patient’s quality-of-life self-assessment, whether based on loss of independence, inability to enjoy meaningful activities, loss of dignity, or unmanaged pain and suffering.” (Emphasis added)

This response includes even being present when the patient takes the lethal overdose: “If present during medical aid in dying, the nurse promotes patient dignity as well as provides for symptom relief, comfort, and emotional support to the patient and family.” (Emphasis added)

For nurses who object to assisted suicide, the position states that “Conscience-based refusals to participate exclude personal preference, prejudice, bias, convenience, or arbitrariness” and that “Nurses are obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient” (Emphasis added)

In other words, nurses would have to abandon their vital role in preventing and treating suicide for some of their patients when the issue is assisted suicide. And a conscience-based refusal to participate depends on whether or not another nurse willing to participate is available.

Although the ANA insists that their position “is intended to reflect only the opinion of ANA as an organization regarding what it believes is an ideal and ethical response based on the Code of Ethics for Nurses with Interpretive Statements”, the effect is chilling for those of us who cannot or will not help our patients kill themselves even where legal.

Already, Compassion and Choices (the former Hemlock Society) is praising the ANA for “dropping opposition to ‘medical aid in dying’”, stating that “It’s no surprise that the largest national nursing association recognized the growing public demand for medical aid in dying and updated their policy to allow nurses to better support their patients at life’s end.” (Emphasis added)

But the ANA may eventually have to again update their position on assisted suicide since we are now seeing, as in a (thankfully failed) recent bill in New Mexico,  further attempts to change the definition of terminal illness to expected death in the “forseeable future”,  non-physicians such as advance practice nurses able to prescribe assisted suicide, inclusion of people with mental health disorders, approval by “telemedicine” and no state residency requirement.

Right now, less than ten percent of the nation’s nurses are members of the ANA or other professional organizations” and that number is declining. The ANA should reconsider its new position on assisted suicide for the good of all nurses and even society itself.

In the end, who will remain or want to enter a healthcare profession that allows helping some patients kill themselves? And how many of us would be just as trusting with a nurse who is as comfortable with assisting our suicide as he or she is with caring for us?

 

Contact

Marianne Linane RN, MS, MA, National Association of Pro-Life Nurses Executive Director

📞  (202) 556-1240
✉  Director@nursesforlife.org

Nancy Valko, RN ALNC Spokesperson for the National Association of Pro-Life Nurses

📞 (314)504-5208

Website: www.nursesforlife.org

Facebook: https://www.facebook.com/Nurses4life/

 

 

American Nurses Association Damages Good Nursing with Misleading “No Stance” on Assisted Suicide

In 2017 and despite opposition by nurses and groups like the National Association of Pro-life Nurses, the American Nurses Association (ANA) approved a new position on “Nutrition and Hydration at the End of Life” supporting a form of suicide called VSED ( voluntary stopping of eating and drinking) to “hasten death”.

The ANA also stated regarding VSED that nurses who have “an informed moral objection….should communicate their objections whenever possible, to provide safe alternative nursing care for patients and avoid concerns of patient abandonment” (Emphasis added)

In March 2019, the American Nurses Association (ANA) then wrote a draft position paper “The Nurse’s Role When a Patient Requests Aid in Dying” that would have dropped the ANA’s long-standing opposition to physician-assisted suicide and even change the term “physician-assisted suicide” to “medical aid in dying”. The paper would require nurses to be “non-judgmental when discussing end of life options with patients”, and that nurses who object to assisted suicide are still “obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.

In other words, nurses would have to abandon their vital role in the prevention and treatment of people with suicidal ideation for some of their patients when the issue is assisted suicide. Conscience rights could only be invoked if free from “personal preference, prejudice, bias, convenience, or arbitrariness”. (Emphasis added)

Many people responded with shock and dismay, including many nursing organizations like the National Association of Pro-life Nurses and even the Canadian Catholic Nurses Association  that warned about their experience after assisted suicide was legalized there in 2015:

“we experience ongoing demands for access to lethal injections for new categories of patients, including “mature minors;” those who write advanced directives; and those whose mental illness is the sole condition underlying their request.” (Emphasis added)

THE FINAL POSITION

Now the ANA has issued its final position on “The Nurse’s Role When a Patient Requests Medical Aid in Dying” (aka physician-assisted suicide) that claims it is not “a stance for or against medical aid in dying but rather to frame the nurse’s compassionate response within the scope of practice”. (Emphasis added)

However, this new final position has the same problems as the draft when it states that a nurse should:

 “Remain objective when discussing end-of-life options with patients who are exploring medical aid in dying”

And now, a new requirement is added for the nurse who objects to participating in assisted suicide:

“Never ‘abandon or refuse to provide comfort and safety measures to the patient’ who has chosen medical aid in dying. Nurses who work in jurisdictions where medical aid in dying is legal have an obligation to inform their employers that they would predictively exercise a conscience-based objection so that appropriate assignments could be made.” (All emphasis added)

This obligation to preemptively inform employers about objections to participating in terminating life opens a nurse to potential discrimination, bullying or even termination of employment, not to mention the chilling effect on ethical men and women considering a nursing career.

CONCLUSION

In its press release on the final position, the ANA states that its new position is “a step in a new direction for ANA and provides guidance for almost 1 million registered nurses in the U.S. who practice in the nine jurisdictions where medical aid in dying (MAID) is legal.” The ANA also states that “This statement is intended to reflect only the opinion of ANA as an organization regarding what it believes is an ideal and ethical response based on the Code of Ethics for Nurses with Interpretive Statements.” (All emphasis added)

However, the ANA also claims that it ‘is the premier organization representing the interests of the nation’s 4 million registered nurses’ even while  less than ten percent of the nation’s nurses are members of the ANA or other professional organizations” and that number is declining.

The ANA along with the American Medical Association (AMA) are the best known health care professional organizations and both are very politically active.

Ironically and just last month, the AMA House of Delegates decisively reaffirmed the AMA’s long-standing opposition to assisted suicide while the ANA has now surrendered its influence to the pro-assisted suicide movement.

Just as bad, the ANA has now effectively abandoned ethical nurses’ conscience rights when it comes to deliberate death decisions.

Although we now have the Conscience and Religious Freedom Division established by the Trump administration in the Office for Civil Rights to enforce already existing “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services” and has a link to file a conscience or religious freedom complaint, it’s final rule implementation has now been delayed by lawsuits.

As assisted suicide and other such deliberate death decisions continue trying to expand, it is more necessary than ever that all of us-the public as well as healthcare professionals-understand and fight the pro-death movement to regain our trust in the healthcare system.