Convincing Us that Dying by Starvation is Desirable

Food and water are essential for life; we know we will die without them.  If people cannot eat and drink safely and sufficiently because of frailty or illness, we do not leave them to die. We use a very simple and effective device known as a feeding tube.  PEG tube placement is a minor procedure involving a small incision that does not require general anesthesia; most anyone can have one placed.  They are a very effective means of providing nutrition to prevent weakness and death due to starvation, So why has the palliative care and hospice community put so much effort into convincing the rest or the medical community, caregivers, and society in general that feeding patients is optional, even extraordinary?

Dying of starvation is slow and unpleasant, taking up to two weeks to complete. So why does Compassion and Choices have a free booklet teaching people about VSED (Voluntarily Stopping Eating and Drinking)? Apparently people have gone through with this bizarre practice with the support of family and friends, as reported by The Daily Beast: The Nurse Coaching People Through Death by Starvation. Since they already promote the practice, why force doctors to get involved by advocating for doctor-prescribed suicide?

As the article's description states, "But what about terminally ill patients who live in states like New York, without a Death with Dignity law?" Compassion and Choices is all about suicide, regardless of prognosis.  The article goes on to say:

According to the medical literature, as well as Schwarz’s experience, most terminally ill patients die within 10 days of starting their fast. But they go into comas much earlier, often within the first three days. The hunger usually subsides quickly, but thirst sometimes causes serious pain. Oral care and medications can help.

Often patients decide against self-dehydration after meeting with Schwarz. It just relieves their anxiety to know they won’t be utterly helpless against their diseases. It’s a psychiatric opiate.

The article then speaks about the "ethical" perspective.

Timothy Kirk, a medical ethics professor at the City University of New York, predicts that the major hospice and palliative-care organizations will issue public-policy statements on the procedure soon... clinicians could learn more about the best methods for alleviating pain, and get better at predicting how long the process will take for each patient.

He noted that so far, no one has broadly challenged the procedure on ethical grounds, except within certain religious communities, such as the Catholic Church.

Thank goodness for the Catholic Church!

In 2014, The Weekly Standard published an article, The Ethics of Food and Drink about legal challenges to force the medical and long-term care communities to participate in these suicides.  It notes that the withholding of spoon feeding is now appearing as an option on some advance directives.

This all makes feeding tubes look even more extraordinary, and more like a medical intervention rather than a simple means of keeping a patient well-nourished.  The medical literature wants to believe this as well.  We currently have no good prospective studies to determine how effective feeding tubes are, just common sense.

As a Medscape review article points out, "Although difficult to evaluate, on the basis of the available evidence, PEG placement does not seem to improve the quality of life in patients with dementia."  This is because PEG are placed after significant weight loss or drop in serum albumen levels. This latter condition indicates the person is already poorly nourished by the time the tube is placed, and is one of the most significant indicators of death.  In other words, the studies are comparing patients who get tubes (who are by definition malnourished to qualify for a tube) to those who did not get tubes (because they were not malnourished and so did not qualify for a tube.)  It's no wonder feeding tubes do not seem to be very effective!

No one has yet to compare patients with the same serum albumen levels by giving one group PEGs and other group hand feeding. As another 2015 clinical review states, no level I evidence (from a systematic review of all relevant randomized controlled trials) exist.  Most studies provide only level III evidence (from well-designed controlled trials without randomization, quasi-experimental.)  And yet, in the echo chamber of the medical literature, feeding tubes have become largely discouraged in patients with dementia.

This is no longer about good medical evidence, but about bad perceptions. We have gone from maybe feeding tubes don't give much benefit to fighting against their use to VSED.  While feeding tubes need to be considered for individual circumstance, we need to stop denying them without evidence to do so.  Maybe we will come to our senses and realize once again that food and drink are essential care and that VSED-by-proxy is another name for murder.

DNR Does NOT Mean Comfort Care Only

The screenshot above is from an interactive Medscape article, Applying End-of-Life Documents in the Real World.  As you can see, 81% correctly identified the Do Not Resuscitate (DNR) status from a POLST or Living Will.

76% of medical professionals interpreted DNR to also mean patients only want comfort care/end-of-life care.

In this type of healthcare climate, any kind of advance directive is risky to have as it is very likely to be over-interpreted such that patients are not receiving the care they desire.

The Medscape article was written by Dr. Ferdinando Mirarchi, the lead investigator of the The Realistic Interpretation of Advance Directives (TRIAD) studies, all of which demonstrate widespread over-interpretation of these orders throughout the medical system.

His suggestion: ask the patient!  He also advocates for a trial of treatment that can be withdrawn if there is no benefit after 24 to 48 hours--a far cry from talking patients out of treatments, a practice commonly promoted today.

Abort Millions for the Right to Abort One?

The November 4, 2015 edition of the Boston Globe published yet another Why I Had My Abortion story.  This is the current media trend in order to "normalize" abortion and generate some sense of pride about it. Sadly, most women I talk with in the emergency department have deep and long-lasting regrets.  In this article, too, the pain is palpable.

"We weighed every scrap of information in the context of our unique situation." Trish Karter writes.

Unique, indeed. After conceiving a son and a daughter through fertility treatments (no mention if this involved IVF in which she would have chosen to implant two children), she discovered her daughter had Trisomy 8.

Here are her reasons for aborting her daughter; note that none of them contain any certainties.

1. "In 1993, our doctors told us that while our unborn son was healthy, his twin sister might not make it to term and would probably not survive childhood."
• The abortion assured she didn't.
2. "I learned that her condition might cause a spontaneous loss of both babies."
• Or it might not. Keeping abortion legal means millions of babies could be killed in order to possibly increase her one son's chance of surviving.
3. "If born, she would most likely have devastating limitations and maladies."
• While Trish's baby had Trisomy 8, babies with another genetic abnormality, Trisomy 21 (also known as Downs Syndrome) are aborted 90% of the time.  This is likely a driving force behind keeping abortion legal for people like Trish.
4. "There were also unquantifiable threats to my health if we decided to try to bring both babies into the world."
• I am not sure what those would be apart from any other twin pregnancy.
5. "We would likely not have another opportunity to have a second child, since this pregnancy was the happy result of years of fertility treatments."
• Again, we will legally abort millions of babies, and accept that she could abort one, so she could have that particular baby?

Trish concludes with, "I don’t share our story now because it is unique; I share it because it isn’t." Many of the people who do share her story have conceived "abnormal" babies and were heartbroken to "have to" abort them.  Her story could very well have been about her two wonderful babies even though the doctors advised her to have an abortion.

Physician Suggested Suicide

If you click on the image you can read part of an article from the November 4, 2015 issue of the Journal of the American Medical Association (JAMA). The free preview is available here.

The author, Toby Campbell, is writing as a palliative care consultant about a patient with a neurological disease. Keith fell out of his wheelchair and broke his clavicle.  This led to his breathing being weakened.

"We decided during the consultation that Keith would not be ventilated and that he was at peace with dying," Campbell writes.

In other words, they discussed Keith committing suicide.  Keith had resigned himself to dying during that conversation.  He was started on a he was started on a BiPAP machine, something similar to what people with sleep apnea use at night, and sent home to die,

The problem was that he didn't die. After three months and three good-bye celebrations, he "began to despair" because he required BiPAP and others to care for him.  Well, as the article implies, who would want to live like that?

He writes, "We talked openly about his options for taking control of his end-of-life care, including stopping positive pressure ventilation."

I don't understand why Campbell had to visit Keith's to discuss flipping a switch on a machine that, according to the story, everyone wanted to flip.  At any time in those three months Keith could have simply stopped using the BiPAP.  Was this really, then, a discussion about end-of-life care or a physician giving him permission to, or even talking him into, committing suicide?

Patients don't need doctors to die. Sadly, Keith and those who loved him were counting the minutes until it happened, and didn't want to have to count very long.

All Human Life Has Dignity

This article first appeared in the October 16, 2015 edition of the Catholic Free Press.

We will all die, yes, but only a few of us (less than 10%) will die suddenly.  Most of us will suffer for a time before dying. The way we live out the time until that moment is of profound spiritual significance, and the moment of death itself is a sacred one. The way we care for loved ones with declining health through that moment of death is just as significant.

For many, that suffering will entail a prolonged and debilitating illness. Do we have trouble looking upon the frail? Are we made uncomfortable by the physically or mentally disabled? Does a lack of human beauty repulse us? An emergency physician once said about a patient, “If I ever get like that just shoot me.”  What trust would you put in him, or even a family member, that thought like that?  Does our own pride, with its need for control and independence, say, “I don’t want to live like that,” either?  Do you trust yourself?

A mere 3% of people choose physician-assisted suicide because they are in pain.  Most people choose it because they are afraid of what might happen, like future suffering, dependence on others, or a loss of “dignity”; in other words, because they don’t want to live like that. Imagine, then, what physician-assisted suicide says to the disabled. Young people who suffer sudden, debilitating illnesses become depressed; within a year they find happiness once again.  Why, then, at some certain age (whatever age that might be) do we accept suicide over love and care, mistaking it for mercy and dignity? Will “old” age or time left to live no longer even matter as suicide becomes accepted? That is exactly what has happened in Europe.

Imagine, too, what physician-assisted suicide says to people who have been physically changed by treatment. Do the changes that happen as sicknesses progress—dementia, incontinence, inability to walk, tubes, baldness, radiation burns, bloating, or whatever else—change our love for those who are suffering? They need to be assured that we look upon them with the same eyes that Jesus Christ looks upon each of us, with love that sees beyond our human frailties and failings. Unconditional love.

As disciples of Christ we hand our lives over to Him and seek to do His will. The Father is all-knowing and all-powerful, and Jesus Christ pours out His great love and mercy on each of us; we trust that God’s will for us comes from that knowledge and power, love and mercy. Our lives, our sufferings, have a greater purpose, whether we suffer with our own illness or with our sick loved ones. Can we really know better than to end life before natural death?

The medical community also must rebuild a culture in which all human life has dignity. No frailty is undignified, no patient undeserving, and no life without meaning. Every beneficial medical treatment must be offered to every patient, and we as patients should accept them. This does not mean every treatment under every circumstance, not at all. We will refuse treatment if it does little to improve our condition or ease our suffering, but not because we are of a certain age or have a certain illness.

Acceptance of physician-assisted suicide forever changes our relationships with our families and our healthcare providers.  It destroys human dignity by making vulnerable those who are disabled, frail, or weak. Let us live, suffer, die, and care for one another as Jesus Christ did for us all, caring for all life until natural death.

Having a Healthcare Proxy Should Be Your Only Advance Directive

This article first appeared in the September 15, 2015 edition of Catholic Free Press

“That 81-year-old female that came in with altered mental status, the chest x-ray show she has pneumonia. I started the antibiotics. She’s gotten a liter of fluids but her pressure is still low. I’ve page the ICU resident to get her admitted,” the physician assistant explained to be attending emergency physician.

“Didn’t you tell me before she was DNR?” the physician replied.

“Yes, she is.”

“Then cancel the ICU. She can be admitted to the floor.”

Critically ill patients with pneumonia are three times more likely to die if they are not admitted to the intensive care unit from the emergency department. This scenario, in which a patient with a Do Not Resuscitate (DNR) order is assumed not to want care in the intensive care unit, is a regular occurrence.

Advance Directives are medical decisions that people make to be carried out should they become too sick to tell the doctor themselves what treatments they want or do not want. Many people for very good reasons want a DNR order as an advance directive, meaning if their hearts stop beating and they stop breathing then they do not want attempts to be made to restart their hearts with CPR or defibrillation.  But what is it about DNR orders that leads emergency physicians and other providers to presume that these patients do not want other types of care? In what way does a DNR order lead them to conclude that an 81-year-old woman with pneumonia does not want to be admitted to the intensive care unit? And yet that is the current practice in emergency medicine.

A health care proxy is a person you designate to make medical decisions for you if you cannot make them yourself. In Massachusetts, we have the benefit of a Roman Catholic Health Care Proxy form.  It is very similar to the proxy forms you get at hospitals, but also includes choices consistent with our Catholic faith, like calling a priest to administer the Sacrament of the Sick, and providing food and water—even through artificial means—unless our lives are at their very ends.

The person you choose as your proxy should share your Catholic values regarding health care. He or she can make decisions for you in circumstances where the outcome may be unclear. She may ask the doctor to try a treatment and if your condition does not improve, request that the treatment be stopped. Your proxy needs to be someone that can make decisions like these, who will consider each situation when it occurs, rather than you deciding in an advance directive that you never want a treatment no matter what the situation.

In today’s health care climate, we are far more likely to have treatments withheld rather than given excessive treatments that unnecessarily prolong our lives. In fact, we have to ensure that ordinary care, such as food and water, are given. Such a climate is a dangerous one, indeed, for physician-assisted suicide. We need to care for life until natural death, not hasten it to an end to preserve something as ambiguous as “dignity.” Life itself has dignity.

A person’s autonomy is not being respected by the medical community when it over-interprets a DNR order or other advance directives. Sadly, this means you should not have any advance directives if you want the best chance of receiving all beneficial medical treatments. Every adult should complete a health care proxy form so that someone you trust will make decisions for you when you cannot.