Minding Your Medications, Especially When You are Older

nancyvalko medical

When I first started out as a nurse in the late 1960s, I saw several patients admitted to determine why they had “mental status changes”, such as confusion. One of my first duties on admission was to make a list of medications the patient was taking.

I was alarmed to find some of these patients, usually elderly, were taking a large number of medications and some were similar and/or had potential interactions with other medications. When I first brought this to the attention of a doctor, he was skeptical until he read one of the patients’ lists.

The result was that he reevaluated every medication and temporarily stopped all medications that were not crucial. When the patient rapidly improved and went home with a much reduced list of medications, he and I shared this with other doctors and many other such patients then rapidly improved.

However, according to a December 12, 2017 article from Kaiser Health News titled “An Overlooked Epidemic: Older Americans Taking Too Many Unneeded Drugs”, such problems with medications continue to exist in our fast-paced health care system and older people continue to be especially at risk.

As the article states:

“At least 15 percent of seniors seeking care annually from doctors or hospitals have suffered a medication problem; in half of these cases, the problem is believed to be potentially preventable. Studies have linked polypharmacy (multiple medications) to unnecessary death. Older patients, who have greater difficulty metabolizing medicines, are more likely to suffer dizziness, confusion and falls. And the side effects of drugs are frequently misinterpreted as a new problem, triggering more prescriptions, a process known as a prescribing cascade.

The glide path to overuse can be gradual: A patient taking a drug to lower blood pressure develops swollen ankles, so a doctor prescribes a diuretic. The diuretic causes a potassium deficiency, resulting in a medicine to treat low potassium. But that triggers nausea, which is treated with another drug, which causes confusion, which in turn is treated with more medication.

For many patients, problems arise when they are discharged from the hospital on a host of new medications, layered on top of old ones.” (Emphasis added)

Some doctors are now trying to combat the problem through education  about “deprescribing” — systematically discontinuing medicines that are inappropriate, duplicative or unnecessary.

I saw this problem recently in my own family when one of my older but still vigorous relatives in remission from cancer suddenly started to deteriorate. At first, her daughter thought the cancer had come back but the tests were negative.

The mystery was solved when it was discovered that my relative’s ophthalmologist (eye doctor) changed her eye drops for glaucoma but, unfortunately, the new medication also contained some of the same drug she was using for her heart condition.  When the medications were adjusted, my relative was back to normal within a short time.

MY RECOMMENDATIONS FOR MEDICATION USE AT ANY AGE

1. Keep an updated list of all medications you take-including supplements like vitamins and over the counter medications-with you or a family member. Make sure all of your doctors have this list.

2. Especially if you take several prescription medications, don’t be afraid to ask your doctor if you still need all your current medications. With pain medication, especially narcotics, ask about how long you should use them and if or when you should start using over the counter pain medicine instead.

3. Ask about all your medications’ intended purpose and side effects  so you can recognize a potential problem.

4. If possible, use one pharmacy so that all your medications will be listed in one place and possible interactions can potentially be picked up.

5. Feel free to ask the pharmacist questions about your medications, even after you have already filled and started the prescription. They are there to help and medication is their specialty. You can even ask them how to safely dispose of older or narcotic medications you no longer need. Personally, I use a pharmacy that is open 24 hours a day.

I hope these tips will be helpful to you and your loved ones!

 

Compassion and Choices Celebrates as the Massachusetts Medical Society Becomes the 10th State Medical Association to Succumb to the Physician-assisted Suicide Agenda

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

In 1980, the Hemlock Society (now known as Compassion and Choices) was formed to  work for the legalization of physician-assisted suicide by proposing state legislative bills, voter initiatives and public advocacy.

These efforts failed until finally in May 1994, the Oregon Medical Association changed its position opposing physician-assisted suicide to neutrality.

Six months later, Oregon voters approved the very first US physician-assisted suicide law 51% to 49%.

Not surprisingly, now the Oregon Medical Association “supports the position that ‘death with dignity’ (aka physician-assisted suicide) is part of the doctor-patient relationship”.

Obviously, the neutrality of the medical association was a big factor in getting the first physician-assisted suicide law passed in the U.S. as well as its eventual integration into Oregon’s health care system.

Now, Compassion and Choices, the now well-funded promoter of assisted suicide and other death “choices”, is celebrating that:

“The Massachusetts Medical Society is the 10th American Medical Association chapter that has dropped its opposition to medical aid in dying and adopted a neutral stance on the practice, including nine of them in the last two years. The others are the California Medical Association in 2015, Colorado Medical Society in 2016, Maryland State Medical Society in 2016, Medical Society of the District of Columbia in 2016, Maine Medical Association in 2017, Minnesota Medical Association in 2017, Nevada State Medical Association in 2017, Oregon Medical Association in 1997 and Vermont in 2017.” (Emphasis added)

And that:

“Massachusetts’ ‘neutral engagement’ position is even better than a simply neutral position,” said Rebecca Thoman, M.D., campaign manager for Doctors for Dignity for Compassion & Choices. “It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Ironically, as the Boston Globe reported in January 2017,:

“The vote before the Massachusetts Medical Society was whether to approve a survey — just a survey — of members’ attitudes toward “medical aid in dying.” …

In the end, the policy-making body decisively endorsed the survey and approved $25,000 to fund it — a sign that the Massachusetts Medical Society may be reconsidering its historic rejection of what it has called “physician-assisted suicide.’’ It comes as this movement to give terminally ill patients an option to end their life at a time of their choosing is gaining traction, propelled in part by some physicians’ groups dropping their longstanding opposition. (Emphasis added)

The surveys were ultimately sent to 25,000 doctors but only 12 to 13 percent were returned. Of those returned, approximately 60 percent of respondents wanted the medical society to rescind its opposition to physician-assisted suicide, while 40 percent wanted to keep the policy.

The most fundamental medical ethic of not killing or helping patients kill themselves must not be reduced to a popularity contest.

If this radical change in medical ethics results in the Massachusetts legislature legalizing physician-assisted suicide or by yet another voter referendum, the Compassion and Choices agenda to legalize assisted suicide throughout the U.S. will continue to accelerate to the detriment of the health care system, ethical health care providers and all medically vulnerable people.

Killing with Love?

nancyvalko abortion, assisted suicide, disability

Two disturbing news items in the UK recently caught my eye. Both involved actions considered criminal in the past, but now reconsidered as acts of love. Unfortunately, we have had similar cases here in the US.

MAN WON’T GO TO PRISON AFTER KILLING HIS DIABETIC FATHER WITH AN OVERDOSE OF MORPHINE

In a November 17, 2017 UK Telegraph article, a 59 year old chemist named Bipin Desai, admitted pouring morphine into his father’s fruit smoothie and then injecting the diabetic father with insulin. The judge directed the jury to find Mr. Desai not guilty of murder but rather of assisted suicide.

The judge told Mr. Desai that:

“Your acts of assistance were acts of pure compassion and mercy. Your father had a solid and firm wish to die. For him, being assisted to die would be fulfilling his wish of going to heaven to see his wife and being put out of his misery.”

Ironically, the father was not even terminally ill but rather “he had just had enough of life and there are no real authorities who deal with that situation.” (Emphasis added)

Mr. Desai was allowed to go free with a suspended nine month prison sentence for assisting his father’s suicide and told by the judge:

“You are free to now go with your family and start the process of rebuilding your life.”

And apparently still able to be an heir.

MOM WINS $12 MILLION IN WRONGFUL BIRTH LAWSUIT, SHE WISHES HER SON WAS NEVER BORN

Omodele Meadows of the UK was given $12 million dollars for the “wrongful birth” of her now 6 year old son Adejuwon.

Four years before she became pregnant, Ms. Meadows had a test to see if she had the gene linked to hemophilia because a relative had a child with the condition. Ms. Meadow’s test mistakenly showed that she did not have the gene.

After her son was born and found to have both hemophilia and autism (a condition that has no prenatal test, at least for now), she sued the doctor who gave her the results. Ms Meadows claimed that if she knew she had the gene for hemophilia, she would have had her son prenatally tested and aborted him.

The judge wrote:

“It cannot be easy for any mother to contend bluntly that her child should not have been born. ‘Her love for her son shone through from her written statements. ‘She had specifically sought to avoid bringing a child with hemophilia into the world, knowing the suffering that condition causes.” (Emphasis added)

The judge added that Ms. Meadows now loves her son dearly and had only brought the claim “to provide a better life for her son”.

Did anyone wonder what Baby Adejuwon will think if or when he finds out about the circumstances of his mother’s case?

CONCLUSION

Before the legalization of abortion and euthanasia, we had consensus that killing a person because he or she was ill or disabled was absolutely wrong and unjust.

Now we are urged to accept that killing can be a loving act and should not be criminalized. And, if a diagnostic mistake is made and an abortion avoided, parents who would have aborted should be compensated, even richly.

What does that tell people who are ill or who have disabilities as well as all of us who lovingly care for these people? What does this do to our laws, ideals and attitudes?

In our hearts, we all really know that caring for lives, not killing, is the right thing to do. When we insist on ignoring this truth, tragedies like these two cases will not only continue but also devolve into terrible social, medical and legal policies that will affect us all if we do not speak out now.

A Thanksgiving Story

nancyvalko disability, pro-life

This fall, an expectant mother from a small town in Missouri found out that her son had spina bifida, a condition where the spinal column does not close all the way during the baby’s development. This can cause a range of serious, even life-threatening problems such as nerve damage, paralysis and fluid buildup around the brain.

In the past, babies with this condition were operated on soon after birth but in the last few years, intrauterine (inside the womb) surgery was developed to treat the baby before birth to get the best possible outcome for the baby. In an October 23, 2017 New York Times article about one such surgery, the doctors claimed that the optimal time for this surgery is 24 to 26 weeks.

Although many women tragically abort their babies with spina bifida, this brave expectant mother wanted for this surgery for her son. The surgery was scheduled at a large medical center in St. Louis.

Hearing about this, a call was put out to the St. Louis pro-life community to help this mom. One person donated an apartment near the medical center for her before the surgery because she was on bed rest and afterwards for recovery.  Many people made meals and helped in other ways.

Mother and baby are now doing well and we are all praying for an uneventful final weeks of pregnancy and a safe delivery.

Especially at Thanksgiving, we give thanks for the blessings we enjoy. Perhaps we should also give thanks that we have such wonderful, selfless people like those in this story!

“When Dying (by Physician-assisted Suicide) Becomes Unaffordable”

nancyvalko assisted suicide, euthanasia

Although physician-assisted suicide is consistently portrayed in major media as just a matter of taking some pills and peacefully going to sleep and die, a November 9, 2017 article titled “When Dying Becomes Unaffordable” in Medscape (a free subscription resource for medical professionals) describes a very different and alarming scenario.

This article by Roxanne Nelson, RN BSN is primarily about outrage over pharmaceutical companies drastically raising the price for secobarbital, the most commonly used sedative drug dosage prescribed for physician-assisted suicide, from less than $200 to $3000 or higher. However, the article also reveals little-known problems with the oral overdoses themselves, the ironic connection with capital punishment, the rise of lethal injections in other countries and the expected increase in the assisted suicide business.

PROBLEMS WITH ORAL OVERDOSES

Physician-assisted suicide laws are silent on the actual drugs and dosages prescribed but taking the lethal overdose is not an easy matter, according to this article.

For the most commonly used drug secobarbital, a person has “to dismantle 100 capsules to obtain powder to mix into a lethal brew, a process that takes about 1 person-hour of effort“,  “generally mixed with juice of a sweet substance to mask the bitter taste” and “consumed at one time”. (Emphasis added) And, although unmentioned in the article, Oregon’s 2016 data summary on their physician-assisted suicide law reported that the minutes between ingesting the drugs prescribed and death ranged from 7 minutes to 9 hours. But even this related to documentation received on only 25 patients out of the 133 patients taking the overdose last year. The other 108 patients are listed as “information unknown” about the time between overdose and death.

According to the article, the second most commonly used sedative drug oral pentobarbital became unavailable in 2015, in part due to “the uncanny and uncomfortable parallel between executions and PAD (‘physician-assisted dying’, more accurately known as physician-assisted suicide)”. The intravenous form of this drug is used in lethal injection executions and the growing opposition to capital punishment along with limited therapeutic uses may have resulted in oral pentobarbital products “voluntarily withdrawn or discontinued by the manufacturers” and no longer available in the US.

According to the article, physicians in Washington have tried two cheaper and available assisted suicide “cocktails” (the article’s term) containing overdoses of two cardiac drugs, morphine and a sedative after finding that just an alcohol and sleeping pills combination made patients complain of a “burning sensation”.

The first lethal “cocktail” trial called DDMP resulted in 20% of patients taking longer than 4 hours to die but a stronger “cocktail” called DDMP2  is now said to kill the majority of patients within 2 hours.

So far the new lethal “cocktail has been given to about 60 patients and, with 10 more cases, the doctors intend to submit an article on their findings.

LETHAL INJECTION ASSISTED SUICIDE

Ms. Nelson also writes positively about other countries like Canada, Belgium, Luxembourg, and the Netherlands that use lethal injections to allow “more leeway and options as to the selection of drugs, cost, and mode of delivery.”

And, at least in Ontario, patients prefer the injection:

“For example, in Ontario, Canada ― a country where patients have a choice ― there have been very few cases of self-administration, less than 1%, according to James Downar, MD, CM, MHSc, a critical care and palliative care physician at the University Health Network in Toronto.”

And

“There is a strong desire to avoid the oral route here, given the failure rate,” (All emphasis added)

“NUMBERS ARE SMALL BUT SLATED TO GROW”

In this chilling final section of the article, Ms. Nelson predicts that with the recent passage of California’s physician-assisted suicide law in 2015 and more states considering such laws, “the number of individuals choosing this option will be significantly higher.”

And she concludes with this ominous prediction:

“As more laws are passed across the United States, the need for an effective and affordable medication or drug combination becomes increasingly imperative. Even if covered by insurance, artificially inflated drug costs place a burden on the healthcare system and on society in general, so a safe and inexpensive option would benefit everyone.

Currently, unless the generic and widely available drugs used in DDMP2 fall victim to price gouging or some other unforeseen issue, it appears that a viable option has become available.” (Emphasis added)

CONCLUSION

People, sick or healthy, have been dying by self-inflicted suicide since time began but we never encouraged or approved it until the last 25 years. Having medical professionals involved does not make suicide better.

We don’t solve problems by helping people kill themselves and if we don’t reject physician-assisted suicide, we will inevitably find ourselves-like Canada and other countries-expanding to lethal injections and other groups of people who are judged “better off dead”.

This is truly what we cannot afford.

Defending Physician-assisted Suicide

nancyvalko assisted suicide, Compassion & Choices, medical ethics, mental health, nursing, suicide

In a recent letter to the editor in the Wall Street Journal,  Dr. David Grube, national medical director of Compassion and Choices, defended physician-assisted suicide by stating:

“I knew that the people who requested it didn’t want to end their life. They loved life but realized they had an incurable, terminal disease and didn’t want to suffer needlessly as the inevitable end of life approached.

The proof is that more than one-third of terminally ill Oregonians who obtain the medication never take it, but they get great comfort in knowing they have access to it if they need it, which helps them suffer less.” (Emphasis added)

Is this really the crucial argument to upend our medical and legal ethics to legalize physician-assisted suicide?

Especially when more than 33% of people approved for assisted suicide don’t use the lethal overdose prescriptions, this should be a wake-up call for assisted suicide activists as well as suicide prevention groups and the rest of society.

As a former oncology (cancer) and hospice nurse who cared for many terminally ill patients including relatives over decades, I encouraged my patients and family members to talk about all their concerns. I found very few who wanted to end their lives out of fear of future suffering. I  reassured my patients and relatives that we would make them as comfortable as possible and support them until their natural death. Not one died by suicide and all died with true dignity.

But this was before physician-assisted suicide began to be legalized, glamorized and  promoted by activists, especially through sympathetic media outlets.

WHERE IS THE FOLLOW UP ON THE PATIENTS WHO DON’T TAKE THE LETHAL OVERDOSE?

What happened to these patients who decided not to take the lethal overdose? Did they unexpectedly improve or find their symptoms adequately treated? Was the terminal diagnosis wrong? Did they find the physical, emotional and spiritual support to continue living?

Unfortunately, those writing state assisted suicide reports are apparently not interested in this important information that could help save other lives.

WHAT HAPPENS TO THE UNUSED LETHAL OVERDOSE?

Another concern is what happens to the lethal overdose that the patient does not take?

In any home health situation, every unused dose of a controlled medication must be accounted for and disposed of carefully. We know how important it is to keep such medication out of a child’s reach or from misuse by a family member or friend. Keeping overdoses for possible future ingestion is obviously dangerous, especially when our nation is in the middle of an opioid crisis that now kills almost 100 Americans every day.

However when it comes to unused lethal overdoses in assisted suicide, Death with Dignity’s advice is that:

“Anyone who chooses not to ingest a prescribed dose or anyone in possession of any portion of the unused dose must dispose of the dose in a legal manner as determined by the federal Drug Enforcement Agency or their state laws, if any.”

CONCLUSION

When even assisted suicide supporters admit data suggests that the “distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life” but claim that the more than 33% who don’t take the prescribed lethal overdose should still have it to supposedly “get great comfort in knowing they have access to it if they need it”,  physician-assisted suicide is further exposed as a terrible response to human fear and despair.

As our National Association of Pro-life Nurses states, patients need us to take their hands, not their lives.

 

The Changing Rules for Organ Donation

nancyvalko assisted suicide, brain injury, disability, medical ethics, organ donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.“

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) …Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

 

When Children Die, Where is God?

nancyvalko end-of-life, faith, family, grief

This week, I was called to see a beautiful 2 month old baby boy I will call “Joseph” who was brought by his grandmother, mother and father to one of my city’s children’s hospitals from a small town hours away.

Joseph was born with a rare genetic condition called Trisomy 13 and needed medical care for a problem. As a nurse who has been active in medical issues involving people with disabilities since having my daughter Karen who had Down Syndrome, I was asked to help the parents oversee Joseph’s care.

Baby Joseph was doing well until an unexpected problem developed and despite heroic efforts to save him, he died early Friday morning. It was so heartbreaking for his family and the rest of us but their love for Joseph was inspiring and they said they were blessed to have had him.

So instead of my usual blog, I would like to reprint an article I was asked to write for Voices magazine in 2012 in honor of baby Joseph and his wonderful family.

When Children Die, Where is God?

On October 18, 2012, we lost our 6-year-old grandson Noah after a long and often brutal battle with a rare autoimmune disease called familial HLH (Hemophagocytic lymphohistiocytosis). Less than two months later, on December 14, 2012, twenty children around our Noah’s age — along with other victims — were viciously gunned down at Sandy Hook Elementary School by a disturbed young gunman. While the Sandy Hook tragedy affected the whole country and Noah’s death affected a smaller group of family and friends, I kept hearing the same question: Where is God or does He even exist?

The answer is that God is where He always has been when we grieve and suffer: with us and even carrying us through the roughest times, as the famous “Footprints in the Sand” poem depicts.  But what does that really mean?

Almost forty four years ago, I witnessed my first death of a child as a student nurse. Thirty years ago, my baby daughter Karen who had Down Syndrome died from complications of pneumonia. Three years ago, my oldest daughter Marie died by suicide. And now, there are Noah and the Sandy Hook victims. Personally and professionally as a nurse, I have also been with countless parents and others who have lost loved ones. I would like to share what I discovered as my personal “survival guide” for coping with grief as a Catholic woman. It consists of three decisions I made years ago.

I Choose to Live

All death is hard because it involves loss, but the death of a child seems especially cruel no matter whether the death resulted from violence, accident, or illness. No parent expects to outlive their child. When the supposed “natural order” of life and death is breached, it shakes all of us to the core even when the child is not our own. Especially in today’s secular world, even people of faith can feel lost and helpless.

When a child dies, shock, denial, and even alcohol and drugs can cushion the crushing grief for a while but eventually reality sets in. It is hard to even consider facing years and years of living without that precious person. Life is totally disrupted and even the routine of being at a hospital or bedside feels like a loss. In my case when I lost my daughters, I had to remind myself that my husband, children, and others needed me, but at times even that thought seemed totally overwhelming rather than motivating.

Recently Cesar Millan, the famous “dog whisperer” talked about his suicide attempt after a number of losses and how he learned to cope with bereavement from his experience with dogs. When dogs grieve, he recommends three things: exercise, discipline, and affection. He said he found this also helped him.

Looking back, I found that these three techniques had helped me. Exercise decreased my anxiety and pain. Discipline meant appreciating even the most mundane routines of life or work and embracing the distraction. Hugging my loved ones and friends gave me a renewed sense of connection with the world and even with God.

However, I know that life will still contain many challenges. For example, while Noah’s 2 1/2-year-old brother Eli is free of HLH, we recently discovered that Noah’s unborn baby brother Liam, who is due in April, does have the disease and will also need a bone marrow transplant. We pray that he will achieve the cure that eluded Noah but we face the future with our confidence in God intact. I will never be a cockeyed optimist but I do know that storms can be weathered and that we can be better rather than bitter as a result. (2017: Liam is now a happy, healthy 4 year old,)

I Choose to Be Happy

This is perhaps the hardest decision that I or any other bereaved parent has made but it is crucial. Years ago I was with a young mother who tragically lost her 2-year-old son. We spoke almost daily for a long time. Finally, she told me that she couldn’t see ever getting past her grief. I asked her if she had laughed yet. Embarrassed, she said she was watching a TV comedy show the night before and realized that she thought she heard a sound resembling a laugh come out of her. I told her that any laughter was the beginning of healing. I reassured her that she would laugh again and have moments of pleasure more and more in the future and that she should celebrate those moments rather than feel guilty. Life may never be “normal” in the old sense but life still had the potential to be good, perhaps even great.

From other bereaved parents who helped me, I learned that you don’t have to hold onto the grief to hold onto the love you feel for your child. That beloved child would not want your life to be blighted by his or her death any more than you would want your children to be forever sad after your death. And, in our rich Catholic tradition, we honor Jesus’ mother Mary as Our Mother of Perpetual Help, not Our Mother of Perpetual Mourning.

I now look at working toward happiness and fostering a generally cheerful outlook as a tribute to my daughters and grandson. This doesn’t mean that I am immune from being blindsided by grief and longing when I accidentally hear certain songs, see another person their age, witness another death, etc. Like probably everyone else I still have what my husband kindly refers to as my “moments” when life seems like a long, hard slog. But I continuously strive to foster an attitude of gratitude for what — and especially who — I have left. I don’t want the children’s legacy to be one where their deaths destroyed a family.

There is no set timeline for grief and bereaved parents and other relatives need to be patient with themselves and those around them. I remember the old days in medicine when grieving relatives were immediately offered a tranquilizer. I knew even then that this often just delayed the process instead of helped. There is no “good” or “bad” way of grieving. Everyone has their unique journey although it is not a sign of weakness to ask for or offer professional help when necessary.

I was surprised by the depth of grief I felt for the Sandy Hook victims and their relatives. I found it excruciating to watch the relentless TV coverage of the tragedy but I also found it hard to turn away. However, in watching the story unfold, I was struck by the fact that although I have spoken with many other bereaved parents over the last three decades, I never met a parent who said they wished their beloved child had never been born rather than to have faced the grief the parent endured. Obviously, you can never lose when you truly love and I was so glad that the Sandy Hook parents were surrounded by loving, supportive people in their community and countless other caring people throughout the country who wanted to help.

Pain is an inescapable part of the grief journey, but we may hope that we all can eventually get to the point where it is the life, not the death, of our beloved child that is the most important to us.

I Choose Not to Reject God

I’ll never forget reading about a famous and outwardly successful man who said he gave up on the idea of God when his little sister died. This gentleman wound up with a series of failed marriages and despite his millions of dollars, is bitter and unhappy.

There is no question that faith is often challenged when tragedies like the death of a child happen. But rejecting God means rejecting the greatest source of love and healing that we so desperately need at our worst times.

I eventually realized that I never did and never will have total control over my or anyone else’s life and that this is tolerable because God has a Divine Plan. I’ll never forget the wonderful Visitation nuns who taught us that life is like a tapestry that is large, beautiful, and intricate. However, on this earth we see the tapestry only from the back. We see dark colors, chaos, and loose threads that seem to go nowhere. Nothing in the tapestry appears to make sense, much less beauty. It is only when we die that God turns the tapestry around and we can finally see the amazing result. God doesn’t cause tragedies but rather brings good out of the evil we see.

It was when my Karen was born that I discovered that God is communicating with us all the time. It was then that I started noticing what I call the “miracles of grace” that God seems to send at some of our most heart-searing times. Over the years there have been some great ones: The depressed friend intent on suicide who was saved at the last moment by a smile from Karen. The young person who came back to the Church when Marie died. The many people who have volunteered to become bone marrow donors in honor of Noah and to help others like his little brother Liam.

The big miracles of grace also taught me to look for and appreciate the smaller mercies that comforted me and let me know that God is there: The woman who told me that baby Karen had done more good in her short life than most 80 year-olds. Visits from Marie’s friends who told me wonderful stories about her that I never knew before. Great friends who seemed to call at exactly the right moment when Noah was so sick.

When I was a little girl, I was often irritated by my mother’s admonitions to “offer it up for the poor souls in Purgatory” when I was hurting either physically or emotionally. It took years for me to understand that offering up my pain for such souls or any other good intention for others often acted as a kind of pain reliever and, at the same time, made my pain meaningful in a good way. I also learned that even little acts of kindness performed in memory of a loved one were a great form of honor and gratitude for those lives that are still joined to us in God’s community of love.

Today, I would ask those of you who read this to consider offering up a frustrating situation or performing some small act of kindness in honor of Noah, Karen, Marie, and the Sandy Hook victims.

Those children are now in God’s Hands. The world is still in ours and we can make it better.

Can There Really Be a “Safer” Physician-assisted Suicide?

nancyvalko assisted suicide, Compassion & Choices, end-of-life, medical ethics, mental health, suicide

In August, I wrote a blog “Physician-assisted Suicide and the Palliative Care Physician”  about Dr. Jessica Nutik Zitter,  a palliative care doctor in California who approved of physician-assisted suicide, would want it for herself but had still had serious some qualms about actually writing for the lethal overdose herself.

In the end, Dr. Zitter decides that assisted suicide can be rendered “safe” by being rare and practiced by specially trained medical practitioners as “just one tool in the toolbox of caring for the dying-a tool of last resort.”

Thus, Dr. Zitter, perhaps unknowingly, gives support to the Compassion and Choices goal of “normalizing” and “integrating” physician-assisted suicide into standard medical practice. Note  their own description of their activities:

“We help clients with advance directives, local service referrals and pain and symptom management. We offer information on self-determined dying when appropriate and provide emotional support through a difficult time. 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. Compassion & Choices devotes itself to creative legal and legislative initiatives to secure comprehensive and compassionate options at the end of life.” (Emphasis added)

Now in her new article “De-Medicalizing Death”, Dr. Zitter is excited about a new University of California, Los Angeles (UCLA) Health Centers’ program where “only” 25% of patients went on to commit physician-assisted suicide after an “intake process…conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians”.

Ironically, current physician-assisted suicide laws tout the “safeguard” that “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” (Emphasis added),  But that only means evaluating a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required. Thus, it should not be surprising that only 3.8% of people using physician-assisted suicide in Oregon were even referred for psychiatric evaluation in 2016, unlike the standard of care for other suicidal people.

Also, the UCLA new intake process for physician-assisted suicide that so excites Dr. Zitter paradoxically undermines the common media depiction of a terminally ill person in unbearable pain desperate for immediate relief:

“The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.” (Emphasis added)

And

“Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer”. (Emphasis added)

And, I would add, this “game-changer” ultimately resulted in most patients NOT dying by assisted suicide.

As a former hospice and oncology nurse, this kind of listening and support is very familiar to me. We gave our patients such care along with symptom control and our patients died with real dignity with their families supported as well.

Personally, I was never even once tempted to help end any of my patients’ lives.

CONCLUSION

Dr. Zitter is like many people. The idea of controlling one’s own death or avoiding watching a loved one slowly die is very seductive. But, as Dr. Zitter has unwittingly discovered, suicide is the loneliest kind of death and very amenable to intervention.

On the other hand, the legalization and approval of physician-assisted suicide reinforces the underlying despair that leads even many healthy people to think death is the solution to their problems.

When “Losing autonomy” and “Less able to engage in activities making life enjoyable” are the top two end of life concerns of Oregon’s assisted suicide victims in 2016, we have a bigger societal problem than an alleged lack of enough lethal overdose prescriptions.

We need true caring and support, not abandonment to suicide of any kind.

Response of the National Association of Pro-life Nurses to the recent policy Statement of the American Nurses Association on voluntary holding of Food and Hydration

nancyvalko assisted suicide, euthanasia, food and water

I am a proud member of the National Association of Pro-Life Nurses (NAPN) myself. There is also a Facebook page for NAPN. Please share this, especially if you know a nurse or someone who is thinking about becoming one.

September 28, 2017

NAPN Response

The National Association of Pro-life Nurses (NAPN) is deeply saddened to learn of the recent position statement of the American Nurses Association (ANA) regarding the withholding of food and hydration as a means of hastening death.

Our organization had hoped that the announcement of the study of the issue would result in a better decision, but based on the ANA revised code of ethics of 2015, it does not come as a surprise. The ANA continues to show its complicity in promoting the culture of death.

The new position claims that “people with decision making capacity have the right to stop eating and drinking as a means of hastening death.” (Termed VSED for “Voluntary Stopping of Eating and Drinking.)

Unfortunately, for us as pro-life nurses, that means that the ANA will expect that nurses will comply with this decision and “honor” this decision, making us complicit with this form of suicide. As with other positions, the ANA will not come to the defense of any nurse holding a conscience objection to this policy. The ANA has effectively given up its previous position, weak as it was, of opposing assisted suicide.

The entire list of recommendations regarding food and water reads:

 “ANA Recommends that:

  • Nurses recognize those situations when nutrition and hydration can no longer benefit a patient, and adhere to clinical standards that include providing nutrition and hydration only to patients for whom it is indicated.
  • Patients with decision-making capacity—or their surrogates, who are relying on the patients’ preference or have knowledge of the person’s values and beliefs—will be supported in decision-making about accepting or refusing clinically appropriate nutrition and hydration at the end of life.
  • Nurses will have adequate and accurate information to understand patients’ cultural, ethnic, and religious beliefs and values regarding nutrition and hydration at the end of life. Patients’ views and beliefs should be respected.
  • Nurses will support patients and surrogates in the decision-making process by providing accurate, precise and understandable information about risks, benefits and alternatives.
  • Decisions about accepting or forgoing nutrition and hydration will be honored, including those decisions about artificially delivered nutrition as well as VSED.
  • People with decision-making capacity have the right to stop eating and drinking as a means of hastening death.” (All emphasis added)

The ANA statement goes on to admit that “There is some consensus (though not universal agreement) that VSED can be an ethical and legal decision”, but in regard to conscience rights, the document only states that “Nurses who have an informed moral objection to either the initiation or withdrawal of nutrition or hydration should communicate their objections whenever possible, to provide safe alternative nursing care for patients and avoid concerns of patient abandonment.” (Emphasis added)

Communication of the nurse’s objection to compliance “whenever possible” leaves the pro-life nurse adherent to the patient’s wishes if there is no other nurse to assume the task of the Grim Reaper. In cases where this is impossible, charges of “abandonment” can be filed resulting in loss of employment and or license and even to lawsuits.

The statement that “providing nutrition and hydration only to patients for whom it is indicated” is problematic in view of the removal of feeding tubes from the severely brain-injured like those said to be in the so-called “persistent vegetative state” and not dying could be starved to death with impunity. (Emphasis added)

The ANA claims to be the “voice of nursing” and “the nation’s only full-serviced professional organization that represents the interests of the nation’s 3.6 million registered nurses.” Yet, in reality, when the ANA last released its membership numbers in 2011, actual membership was less than 7% of registered nurses in this country.

The 2015 Annual Report does cite a 9% increase in membership, but no figures are available.  They certainly do not speak for the numbers of us who do not share their disregard for the lives of the vulnerable.

At the very least, we health care professionals need our conscience rights honored and protected so that we can truly and ethically care for our patients. With positions like that of the ANA, nurses with a true respect for the sanctity of human life and the protection of it in all its forms are placed in a distinct disadvantage and are pressured to abandon our profession of caring.

For further information, please contact the Executive Director, Marianne Linane, at director@nursesforlife.org.