Below are some examples of real life experiences of patients facing serious health issues. Whether these health issues develop gradually or suddenly, reports on situations and experiences faced by others may be helpful in making critical medical decisions on issues such as: hospice care, feeding tubes, ventilators, CPR, life support, brain death, organ donation, pain control, futile care, palliative care, and more.
No penalty for Dutch doctor who committed involuntary euthanasia
A horrific case of involuntary euthanasia in the Netherlands has been brought to light. In spite of the fact that she had repeatedly stated, “I don’t want to die,” an unnamed elderly woman was euthanized, presumably because she “had earlier expressed a desire to have her life ended when she felt the ‘time was right’.” She was “suffering from dementia.” As the doctor began to administer the lethal injection, the patient “fought desperately” against being killed, so the doctor ordered family members to hold her down in the bed while she killed her. The doctor was cleared of wrongdoing by a government panel. The Telegraph report stated, “Details of the case emerged as the Dutch consider changes in the law which would give anyone over 75 the right to assisted suicide.” See Jan 2017 article
My Brother Don
by Julie Grimstad
No one knows what the future holds. Whether a person has a few minutes, hours, days, weeks, months or years, one still has a future and every last minute counts. It is fear of the unknown — fear of future pain and suffering — that causes many people to despair and ask for assisted suicide or euthanasia. I understand that fear, but also know that facing fear with courage, not opting out of life when it gets rough, is a legacy for one’s loved ones.
My brother Don became a quadriplegic because of a diving accident. At first he wanted to die, but then, with help and an improved living situation, he got a new lease on life. He lived for 11 years with his disability, enjoying and being loved by his children and other family and friends and had a fulfilling life. If assisted suicide had been legal in the early months after Don’s injury, I have no doubt he would have chosen that path instead of life with a disability. Everyone who knew Don is grateful that we had those 11 years with him. We treasure the memories. Because he wasn’t offered the choice to kill himself, my big brother became a hero who bravely learned to live again after he became paralyzed.
Elizabeth Kubler-Ross, in her 1969 book On Death and Dying, wrote: “Lots of my dying patients say they grow in bounds and leaps, and finish all the unfinished business. … But assisting a suicide is cheating them of these lessons, like taking a student out of school before final exams.”
Don learned much in the school of suffering, he took care of unfinished business, and he gave us the opportunity to grow along with him.
Still Knitting at 109
This is not our usual kind of Case in Point, but it’s worth noting that Alfred “Alfie” Date, 109, is Australia’s oldest living person and still using his talent to serve others. Alfie taught three generations of his family to knit and continues to knit scarves for friends and beanies for premature babies. He has recently put his talent to work making sweaters for penguins affected by oils spills off Australia’s southeastern coast. Oil separates and mats the penguins’ feathers, letting cold water seep in and chill them. The sweaters help keep them warm and prevent them from preening their feathers and swallowing oil. Alfie’s nurses in his long-term care home asked him if he’d help a few penguins and he got to work. A self-described “sucker,” Alfie says, “I can’t say no.”
One of the reasons Alfie Date’s story struck me is that it contrasts so drastically with an essay I read recently which made me cringe: “Why I Hope to Die at 75: An argument that society and families-and you-will be better off if nature takes its course swiftly and promptly.” Just the title is scary. The author, Dr. Ezekiel J. Emanuel, is a highly influential man, which is even more troubling. Emanuel is an oncologist, a bioethicist, and a vice provost of the University of Pennsylvania. He is also the author or editor of 10 books, including Reinventing American Health Care.
Emanuel explains his hope to die at 75 by declaring that “living too long” is a loss. “It robs us of our creativity and ability to contribute to work, society, the world.”
Tell that to Alfred Date.
 Nadine Kalinauskas, “Australia’s oldest man knits sweaters for oil spill-affected penguins,”https://ca.news.yahoo.com/blogs/good-news/australias-oldest-man-knits-sweaters-for-oil-203500628.html
 Ezekiel J. Emanuel, “Why I Hope to Die at 75,”http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/
Compassion & Choices has a New Campaign to Reduce Patient Choice by Margaret Dore, Esq., MBA
A few years ago, the owner of an elder care facility told me about one of its residents. He was an older gentleman who was a slow eater, but he had never choked or aspirated on his food. His doctor arranged for a swallow test, which he failed. To prevent aspiration, the doctor said “Nothing by mouth.” The man had previously signed a health care directive saying that he would not want artificially provided food or water. So this meant nothing at all. Moreover, the man’s son sided with the doctor.
Over the next few days, the man said that he was hungry and that he wanted something to eat, until he got too weak to say anything at all.
He was not allowed to change his mind and it was a horrible awful death.
So much for compassion and choice.
Be careful what you sign.
Note: This Case in Point was excerpted from a 12/1/2014 commentary regarding Compassion & Choices’ new campaign to reduce patient choice in healthcare, which can be read at Compassion & Choices has a New Campaign to Reduce Patient Choice: Be Careful What you Sign.
About the author: Margaret Dore is President of Choice is an Illusion, a nonprofit 501(c)(4) human rights organization opposed to assisted suicide and euthanasia. She is also an attorney in Washington State where assisted suicide is legal. See www.MargaretDore.org and www.ChoiceIllusion.org
Challenge Society for More Than Suicide Pills
Editor’s note: Media coverage of Brittany Maynard’s decision to kill herself and her subsequent suicide on November 1st has been intense. This young woman took her own life by ingesting deadly drugs prescribed by a doctor in Oregon, where physician-assisted suicide is legal. Nancy Valko, RN, spokesperson for the National Association of Prolife Nurses, commented: According to the World Health Organization’s publication “Preventing Suicide-A Resource for Medical Professionals” the media should “Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems” and “Provide information about where to seek help” among other recommendations. None of that was done in the weeks of reporting when Brittany Maynard was standing on a virtual window ledge while so many people shouted their support for her “right” to jump.
Some media outlets used language preferred by Compassion & Choices, referring to assisted suicide as “death with dignity.” Ending one’s own life is called suicide. That’s what it is. And it’s tragic, not dignified.
Two days before Maynard’s suicide, Jakki Jeffs, Executive Director of Alliance for Life Ontario, posted the following thoughts on Brittany’s case to the People Magazine website. (People Magazine, 10-17-2014, ran a cover story interview with Brittany Maynard sympathetic to her decision. Mrs. Jeff’s post, slightly edited for this newsletter, is reprinted with her permission.
CHALLENGE SOCIETY FOR MORE THAN SUICIDE PILLS
by Jakki Jeffs
I am not involved in any type of suicide counseling or support but, after an email to my office the day before yesterday, I found myself looking for help for someone who wants to commit suicide. I was told how important it is to remind the person that they are part of a family life circle, a central cog in the family wheel and in society. The death of any family member is always tragic, but when it is suicide it can make a break which can rarely be healed. It is highly important, I was counseled, to remind the individual of the status they hold in that family, the need that family has for her to live, and how important it is for them to let her know they want her to live.
Death by suicide leaves a very big and deep scar in the family, the community and society as a whole. This experience made me read this article and wonder why we have a different attitude to Brittany. Every person, it seems, who contemplates or successfully carries out suicide has a barrier they consider insurmountable or circumstances beyond their control which they “feel” can only be controlled by their suicide. It never is though – they are just dead and the family, community and society are left to pick up the pieces. [In response to statements made by a palliative care physician who opposed her assisted suicide] Brittany commented that her “personal health” should not be used to push an agenda – yet it is so obvious that it is pushing one agenda. Otherwise why [did she] go public?
I know that folks have tried to reach out to Brittany, but I find myself sad at what appears to me to be a “shout out” to all of us about the rotten and tragic situation in which she finds herself and the answer from her family and many others to party and kill yourself. Brittany will commit suicide assisted by the State, while we watch like ghouls. I wonder what effect this will have on the people, many young, who are contemplating suicide right now and how many copycat suicides will happen among them.
Brittany, if I were in your family, I would hold you tight, I would love you forever, I would rage at the unfairness and challenge society for more than suicide pills. I would fight for your care, search for a cure and give you hope to live until you die, reassure you about your dying and watch everything you do, hear every word, feel every breath until the last, see every smile and tear and I would always have hope and I would never give up and nor would you. Now that would be worth a party!
This report is from an attorney in Wisconsin, who has “heard many stories like this”:
True story as relayed to me by a nurse who witnessed it. A woman came to the Emergency Department at a local hospital. The woman was in such respiratory distress that she could not talk. While waiting for a doctor, she was approached by the unit clerk who wanted to complete a POLST with her. The nurse who had brought the woman to the hospital intervened and stopped the POLST process. The ward clerk said it was their policy to do a POLST on any one with respiratory problems. The woman’s problem was an allergic reaction to a new medication. An Epi-Pen injection completely restored her to her current state of health. The woman is in her forties.
We have warned against POLST in several past editions of the PHA Monthly, but it is worth revisiting because it is quickly becoming a standard document in the healthcare industry, and you need to know about it.
POLST means Physician Orders for Life-Sustaining Treatment. Its name and acronym (e.g., POST, MOLST, COLST, etc.) vary from state to state.
POLST is hazardous to your life.
A POLST is a brightly colored, one-page, two-sided form which reduces complicated medical decisions to a “check the box” format with choices to refuse or accept medical procedures, e.g., cardiopulmonary resuscitation (CPR), antibiotics, artificially provided nutrition and hydration (tube-feeding, IV), etc. POLST is a cross between a patient’s advance directive and medical orders. It is tilted toward refusal of treatment and can encourage premature withdrawal of treatment.
Some of the concerns the PHA has about POLST
- The National POLST Paradigm website (www.POLST.org) states: “The POLST form is for seriously ill patients for whom their physicians would not be surprised if they died in the next year, not for all patients.” However, as the Case in Point demonstrates, POLST’s reach has been vastly expanded to include patients who are relatively healthy.
- Dr. Robert L. Fine, Director, Office of Clinical Ethics and Palliative Care, Baylor Health Care System, recently promoted POLST to GETAC (Governor’s EMS and Trauma Advisory Council) Medical Directors in Texas. The title of Dr. Fine’s presentation was “A POLST form for Texas: What is it and why is it important?” He listed three reasons why POLST should be supported, two of which greatly concern the PHA.
“High amounts of unacceptable suffering with 50% of patients having severe pain at the end of life.” PHA comment: If true, this fact indicates an urgent need to improve pain management, not a need for yet another type of advance directive that gives patients the “choice” to die rather than suffer.
“High costs in the last year of life with 28% of Medicare dollars spent in the last year and 14% spent in the last 2 months of life.” PHA comment: When are older people most likely to utilize medical treatment and care? When they are healthy? And no one can accurately predict that it is a person’s last year or even last two months of life. That can only be known after a person has died. Is euthanasia by omission the right way to cut Medicare spending?
- POLST is unlike any other advance directive (i.e., a Directive to Physicians or a Durable Power of Attorney for Healthcare). It requires the signature of a designated medical professional (which no other advance directive requires) and, once signed, becomes immediately actionable medical orders. Some states don’t require a patient’s signature for a POLST to be effective. In many states, a POLST form is valid without witnesses or notarization. How can there be reasonable certainty that a POLST is truly a patient’s wishes if there are no patient signature and/or no witnesses?
Completing a POLST form is always voluntary. Do not allow anyone to push you into it. When approached with a POLST form, our advice is to firmly state, “I have a Durable Power of Attorney for Health Care* which will go into effect if ever I need my agent to make decisions for me. Until such time, I want to discuss my condition and treatment options with my attending physician as needed. Please respect my wishes.”
*The Durable Power of Attorney for Health Care which PHA recommends is the Protective Medical Decisions Document (PMDD) available from the Patients Rights Council, P.O Box 760, Steubenville, OH 43952. Phone: 740-282-3810 or 1-800-958-5678.
Resisting the push toward POLST forms
Jo Tolck, Executive Director of Human Life Alliance (HLA), received a call from a woman from her parish. This woman had been given a POLST (Physician Orders for Life-Sustaining Treatment)* form at her doctor’s office when she was there for the procedure necessary to have a prescription renewed. She reported being strongly encouraged to sign the POLST form. However, having readImposed Death and Informed: A guide to critical medical decisions (HLA publications), she knew this was not a good idea and was incensed at the pressure being put on her to sign the POLST. The staff member finally asked her to take it home and think about it. The woman gave it to the Respect Life chair at their parish. He made copies of it to warn others and asked HLA to put together an information sheet explaining POLST and advance directives. Barbara Hicks, HLA’s graphic designer, created a single sheet which Jo brought to her parish Respect Life meeting on July17th. It will be handed out at the pro-life booth at their upcoming parish festival.
NOTE: The National POLST Paradigm website (www.polst.org, “What is POLST?”) states, “The POLST form is for seriously ill patients for whom their physicians would not be surprised if they died in the next year, not for all patients.” Nevertheless, in many states, POLST’s reach has been vastly expanded, as illustrated by this woman’s experience.
Predicting what one will or won’t want or need in the future – even “within the next year” – is guesswork. Informed consent requires that each health care decision be made in the context of a patient’s present situation, and be based on truthful and complete information presented by medical professionals in a way that patients and their surrogate decision-makers can understand. The POLST form does not foster truly informed consent. POLST is tilted toward non-treatment and can encourage premature withdrawal of treatment from patients for whom – but for the denial of treatment – death is not imminent.
It is critically important that people be warned about POLST. If you would like a copy of the POLST information sheet, call 651-484-1040 or email firstname.lastname@example.org.
*POLST has many different acronyms (e.g., POST, MOST, MOLST, COLST) and names (e.g., in Minnesota, POLST stands for Provider Orders for Life-Sustaining Treatment).
She Deserved a Chance to Live by Mike Hodas
Laurie and I were married for 35 years. Shortly after our wedding we moved to San Francisco, CA. Laurie and I had a very close relationship. We shared a love of art and music. Laurie was known for her collection of WWII home front posters and her love for the color purple, quilts, and especially chocolate. Caregivers loved to work with Laurie and, even after going on to do other things (many became nurses), they continued to stay in contact with her.
Laurie was diagnosed with primary progressive multiple sclerosis (MS) in 1988. After her diagnosis she dedicated her life’s work to promoting improved access for the disabled. Some of the access projects Laurie was involved with were: founding and chairing the San Francisco Museum’s Access Advisors Committee for 24 years; working with the city transit agency (MUNI) to establish ramped taxi for all San Francisco taxi companies; and leading exponent and initiator for curb ramps throughout the city.
Previous to Laurie’s last hospitalization she had been admitted to the same hospital twice. The first time was for a urinary tract infection which became toxic. The second time was for a morphine overdose. The overdose happened after her implanted pump was updated to a newer model. The previous dosage going through the older, less effective pump was not lowered for the new pump.
Her final hospitalization was caused by aspirating her peg-tube feeding. Despite following instructions given by the nutritionists, we probably overfed her. Since she had not been able to eat much by mouth for the last year, her stomach’s capacity probably was reduced. However, previous to this incident, Laurie’s condition had shown marked improvement due to the increased nutrition. Her energy had increased and even her speech had improved.
When Laurie was admitted to the hospital, it was our expectation that the doctors and nurses would do their utmost to cure or improve her presenting problem. We also expected that the attending doctor would seek additional specialist help if the situation was beyond his expertise.
Dr. Y did neither of these things.
Dr. Y immediately ordered that Laurie to be put in “comfort care” (“the treatment of a patient actively dying”). No effort beyond deep suctioning was made to attempt to improve her condition. He refused her hydration and nutrition either through her peg tube or through her PIC line. On the sixth day, Dr. Y placed her on a morphine drip. He told me it was for pain, even though he knew this would be detrimental to her challenged respiratory system, which was her primary problem. That same day he also ordered her BiPAP (breathing mask) removed without consulting me. The next day, struggling to breathe and gasping for breath, Laurie died.
The question must be raised: why would this hospital and doctor, who are supposed to be dedicated to healing, resort to euthanasia? Based on the hospital report, Dr. Y determined treatment was futile.
Was this “medical futility” determination driven by economics or a profound disrespect for the disabled? I have no evidence for the former, but that does not mean it could not have been a factor. As to the latter, there is some telling evidence. The two times Laurie was previously admitted to this hospital, I had discussed with her hospitalist, Dr. T, what I assumed were efforts to euthanize Laurie. I objected very strongly to this approach. The matter was dropped. Each time, Laurie improved sufficiently to be discharged and went home to continue living a relatively normal life.
This last time Laurie was admitted, she was labeled “End Term MS”-a diagnosis that does not exist. This diagnosis was used to pursue the course they had intended to pursue during her two previous hospitalizations. When Laurie left the emergency room, her condition had been diagnosed as moderate. As soon as Dr. Y took over her treatment, he put her on “comfort care,” knowing full well that I was opposed to this kind of treatment given Laurie’s condition. To avoid another disagreement, they decided to forbid discussion of Laurie’s treatment plan with me. The requirement for no discussion was stated in the hospital report. Throughout this whole time I felt like I had absolutely no understanding or control as to what they were doing. Every day I told the charge nurse that I wanted to talk with Dr. Y., but he never came to the room when I was there except for the time he came to tell me he was putting Laurie on the morphine drip.
I do not know whether Laurie would have improved if she had been treated to the fullest of the hospital’s capabilities. However, any caring person would acknowledge that she deserved medical treatment to help her improve as much as possible and live. Nevertheless, the hospital and doctor decided the best thing for this wonderful woman was to be euthanized because, obviously, her life was not worth saving.
Rest In Peace, Eddie Guffey
by Brenda Guffey
On January 17, 2011, my husband Eddie told me, “I think I have to go to the hospital.” It was about midnight and I asked, “Why?” He just kept saying, “I need to go to the hospital.” So, I called 911.
The EMTs came, stabilized Eddie and transported him to the emergency room at Arlington Memorial Hospital. There, the doctors said that he would have died if he hadn’t gotten help in time. He had what they called a “silent heart attack,” but Eddie had sensed something wasn’t right.
After triple bypass surgery, Eddie recuperated at Arlington Memorial for about three months. Then he was transferred to a rehabilitation center in Arlington for 6 weeks. Following that, a team of doctors, nurses, caregivers and I continued his rehabilitation at home for about a year.
On September 20, 2013, Eddie played his guitar, walked our dog, washed the car and went shopping. He bought doughnuts and made coffee and soup. I told him, “Honey, why don’t you take it easy. You are doing too much.” But he wouldn’t listen to me. Just before midnight, while sitting at the computer eating, he screamed. His bowl of soup tumbled under the table. I ran to help him and called 911. The EMTs came again as fast as possible, but he did not get oxygen soon enough. He was diagnosed with encephalopathy caused by lack of oxygen to the brain.
About five days after Eddie was admitted to Arlington Memorial, I was confronted with do not resuscitate (DNR) regulations. I refused to put a DNR order in Eddie’s medical records. After only 21 days in the hospital, he was transferred to a nursing home in Fort Worth.
His skin was perfect when he entered the nursing home, but while there he developed a large bedsore on his back. I believe this was due to neglect as they did not turn him frequently enough. He also started to vomit, had infections and contracted the flu. He was rushed to Arlington Memorial three times and then to Harris Methodist Hospital in Fort Worth three times.
The last time at Harris, I was told they could do nothing more for Eddie. Two weeks after his 60th birthday, on January 16, 2014, I was informed that the hospital ethics committee had made a “medical futility” decision, which was really a death sentence. In 10 days, they were going to stop all treatment, including dialysis, oxygen and tube-feeding. So, I called in help.The chair of the hospital ethics committee had given me a lot of information. One of the papers included a short list of people willing to help find a place to move a patient when a hospital decides to stop treating a patient against his or his family’s wishes. I asked the chair of the ethics committee what this paper was and she replied that it was nothing important; the people listed wouldn’t be able to help. Desperate, I decided to call anyway.
Julie Grimstad, chair of the Pro-life Healthcare Alliance, was on that list. I called her and she, in turn, contacted John Seago at Texas Right to Life, a man who has helped patients and families in many Texas “medical futility” cases. Julie visited Eddie and me at the hospital. When I introduced Eddie to her, he turned his head to look. Julie asked him several questions to which he seemed to respond appropriately. For instance, when she asked, “Eddie, do you hurt anywhere?” he shook his head “no.”
A couple of days later, John, Julie and I met with the chair of the hospital ethics committee and the head social worker. Even though the chair of the committee admitted that Eddie had improved physiologically since the “medical futility” decision, the decision would not be reversed. About a dozen health care facilities throughout the state already had been contacted, but all had refused to accept Eddie. The last resort was to send him back to the nursing home in Fort Worth. It was the only place willing to take him, so I reluctantly transferred him there. It was better than certain death.
The story doesn’t end there. When Eddie needed blood, I refused to let him go back to Harris because the “medical futility” death sentence was still in force there. So, he was sent to Arlington Memorial. From there, I was able to get him into a nursing center in Arlington that provides transitional care.
On March 11th, Eddie asked for vanilla pudding and ice cream! It was wonderful to hear him talking to me again. I could not feed him, even though I knew he wanted something to eat, because the medical staff kept saying he would die or get aspiration pneumonia if he was fed naturally.
On March 19, 2014, my beloved husband Eddie Guffey went home to be with the Lord. I have the comfort of knowing he did not die from denial of life-sustaining treatment and care, but naturally in God’s good time.
Patient Treatment Issues with Hospice
St. Paul, MN – Sue found the PHA website and called. Her mother, suffering from dehydration, was admitted to the hospital at the home health nurse’s suggestion. The hospital took Mom off her antidepressant medication. She was treated and, upon release, was referred to hospice.
During the first visit by the hospice nurse, Mom asked if she would feel better. The nurse said “no” and painted a dire picture of her future. “Well then, I just want to die,” Mom declared. The nurse advised her to stop eating and drinking and she would die painlessly in a couple of days. Mom was not experiencing any physical pain, but the nurse wanted to administer morphine.
After speaking with Ann, the PHA member who took her call, Sue was adamantly opposed to stopping food and fluids and did not want morphine used if Mom was not in pain.
Sue was assured they had the right to fire the hospice and hire a new one if they wished. Ann also advised her never to leave her mom alone with the hospice nurse and that she could and should tell the nurse not to speak to her mother about how to kill herself.
Sue called about a week later to notify Ann that her mother had died naturally at home while they were together. Sue thanked Ann for her help.
Hastened Death Through Dehydration
By an Anonymous physician
I first met Fr. Gerard in 1998 while doing a house call for his mother. A brief initial conversation revealed that he was retired and living in a small apartment only a block from my office, and that we shared many Catholic and pro-life interests. Fr. Gerard soon became a close friend, and we met frequently for meals. I assisted him with various tasks around his apartment, and he called me often simply to talk. He got to know my wife and children well and relied on us for help, as his only sibling lived out of state. Fr. Gerard eventually developed Parkinson’s disease. We offered to take him into our home, but knowing the chaos of our homeschooling household he politely declined, and entered a local nursing home. We continued to visit him often and took him out to dine at his favorite restaurants.
In late 2007 and early 2008, Fr. Gerard’s health declined rapidly. He left a voice message on my cell phone late on a Wednesday in April 2008, asking me to stop and visit. By the time I was able to visit him two days later, he had been admitted to a local hospital for aspiration pneumonia, and had been diagnosed as “terminal” by the treating physician. He was transferred to the palliative care unit from the ER and the treating physician insisted that according to his Living Will, Fr. Gerard wanted no “extraordinary care” to prolong his life.
I was shocked that he was receiving no water, food or IV, only Morphine by slow IV drip. His Parkinson’s was certainly advancing and the aspiration pneumonia was a serious crisis (aspiration pneumonia has a 20 to 60% mortality rate), but food and water did not constitute extraordinary care. We were permitted to wet a sponge to moisten his lips, and he would try to suck all the moisture from the sponge, but we were forbidden to give him a drink of water, because of the “risk of further aspiration pneumonia.”
Fr. Gerard had shared with me his opposition to passive euthanasia in the past, and he was trying to talk to me, but he had become so dehydrated that he could not form words. When the attending physician made rounds, I told him my concern that Fr. Gerard was receiving no food or water. The physician asserted that “their hospice rules forbid IVs” as it only “prolonged the process.” He then stated, “The public has a misconception that death by dehydration is torturous, but that’s not true. It’s the most humane way to do this, with the least discomfort. We will control any discomfort with the Morphine. That’s what we’re going to do.”
With that the attending physician, a Catholic father of six, looked me in the eye defiantly, turned on his heels and left. I was speechless. The next day I pleaded with his sibling that Fr. Gerard would never have consented to passive euthanasia by dehydration, explaining that if he died now it would be due to dehydration, not the aspiration pneumonia or the Parkinson’s, but to no avail.
I have always been pro-life. I had even attended pro-life conferences about euthanasia and had sat on the medical ethics committees of two hospitals, both in the mid 1990’s. I had staff privileges at the hospital in question. But in April 2008, in Fr. Gerard’s specific case, I simply did not know what to do. I called four good pro-life priests locally, begging for advice. They all agreed that something must be done but none could offer any specific advice, and because his sibling held power of attorney none could personally intervene to help their fellow priest.
Another priest I consulted recommended I request a medical ethics committee consultation. Late on a Thursday evening, eight days after Fr. Gerard had left the voice message on my cell phone, I spoke with a physician assistant who was on call for the ethics committee. I told her that he was a good priest and a faithful son of the Church who would never agree to being passively euthanized, and I discussed with her the relevant documents from the Vatican, the USCCB and the state bishops’ conference. She asked me to enter these documents in Fr. Gerard’s chart, and the medical ethics committee would be happy to review the case Friday morning on rounds.
Relieved that there was something I could finally do for this good priest, I went to the hospital Friday morning at 7:00am, asked the unit clerk to formally enter the documents into his chart for the ethics committee consultation, and headed down the hall to visit him.
His room was already empty. Fr. Gerard had died of dehydration several hours earlier.
Negative Medical Advice
A Minnesota woman, now in her late 50s, was diagnosed with Multiple Sclerosis at age 28. Previously a very active runner and body builder, she has an extremely positive outlook in spite of her disability. She was recently admitted to a hospital suffering from pneumonia. A physician attempted to drain fluid from her lung which caused her lung to collapse. She doesn’t have the muscle strength to cough. After a week, she still was not responding to antibiotics, so the physician suggested to her husband that he might want to let her die. Her husband said no. He was shocked (and still is) that the doctor would suggest such a thing. The woman began recovering the next day and is now home.
PHA comment: Unfortunately, medical advice for patients who are chronically ill or disabled is frequently based on an unjust and prejudicial “quality of life” standard instead of the objective “sanctity of life” standard. The latter standard holds sacred the life of every human being regardless of physical or mental condition, age, or “usefulness.” It is the profound obligation of physicians to regard every patient as worthy of their best efforts to protect and preserve the patient’s life and never to extinguish hope, for there is no greater medicine than hope.
Helping a Person Face Infirmity: “It is easier to be than to watch…”
By LaRee Pickup
I have earned a Ph.D. in grief at the school of life.
There is a special torment experienced by those who watch a loved one suffer. To see disease rack their bodies and souls increases the sum total of suffering … because I suffer too. I believe it is harder to watch degenerative disability hurt, torture, and break my loved one than to actually suffer the disease.
I watched my grandparents suffer infirmities–such as blindness, Parkinson’s disease and cancer–associated with extreme age. I have been walking my mother through heart disease and dementia, and now I will accompany her through to the end of her life.
My husband Mark lives with the real symptoms of aggressive, degenerative multiple sclerosis, which have their limits. I am left to witness it all and imagine. Imagination has no limits. Yes, I believe it is easier to be than to watch.
Despite countless trials, love has prevailed. But love is like the two sides of a precious coin. The two sides of love are this: It is life’s greatest ecstasy but also the cause of life’s greatest agonies and anguish. The 19th Century writer, Victor Hugo said, “To love or to have loved, that is enough. Ask nothing further. There is no other pearl to be found in the dark folds of life. To love is a consummation.” And so it is.
Yet, as a wife, mother and grandmother, I want more and ask further.
I want to protect those I love from pain, emotional hurts, disappointments, and even life as it ends. But I cannot. So often I have sat at the bedside of suffering loved ones and prayed, “Lord give me their pain,” as though there is some quota of suffering to be filled which I can bargain over with God. There is not.
Mark Pickup adds: This is an excerpt from a talk LaRee was asked to give at a conference sponsored by the New Jersey Catholic Diocese of Metuchen this fall. LaRee willingly accepted. Unfortunately she had to cancel because her 84 year old mother became gravely ill. (At the time of this publication, LaRee’s mother is still alive but deteriorating with dementia and heart failure.) LaRee was going to take her listeners on the rollercoaster grief journey of our family–the shock, the anger, the fear, the frantic pleading with God, the desperate prayers that seemed to disappear into an empty universe; and, finally, the quiet realization that love (both human and divine) is all that really matters. The pearl of love “in the dark folds of life” is, in the end, Jesus Christ. LaRee’s realization did not come like a clap of thunder, rather like a quiet breeze of understanding and acceptance.
About the authors: LaRee and Mark Pickup have been married for 40 years. They have two adult children and five grandchildren. Their life together has been touched by most of the critical life issues of our time, including abortion, euthanasia, disability and end-of-life-issues. They have used their bitter experiences to advocate for and affirm the value of human life in every state and stage. LaRee and Mark have spoken across the United States and Canada.
Testimony from a Former Caregiver at a Dangerous Assisted Living Facility
This is a condensed version of an e-mail trail of correspondence to Nan Weber (co-founder of Loreto on the Plains Personal Care Home in Hartley, TX) from a caregiver in California who worked at an “assisted living” facility for dementia patients and hospice patients, among others. This caregiver believes that trying to expose what happened there would result in a total belittling of the situation and denial that such murders occurred (and probably continue to occur), but she has urged PHA, “Get my story out there.” Be forewarned, these incidents are difficult to read-the stuff of nightmares.
August 11: I was going over in my head what occurred last evening and doing some research online. My resident received 2O mg (1 ml) of Oxycodone every hour for 6 hours on my shift alone, plus liquid Ativan. Every hour they gave 1 ml of Oxycodone and every 4 hours gave a dose of 2 mg liquid Ativan. But, I think there was an extra dose of Ativan given in there because a family member said he was “agitated.” (I never saw that–he was “sleeping” when I checked him every ½ hour or so.) Doing some quick math here: 120 mg Oxycodone and at least 4 mg Ativan in 6 hours.
Yeah, it was cold-blooded. Caused respiratory depression…and the guy was still having breathing problems due to COPD. He was fine as far as respiratory function, a cough with some raspiness…then went into full congestion and stuff as the night went on and that is why the family member said, “He is agitated.” Sure. He was fighting for his life and the meds were snuffing him out. He never had a chance.
August 12: I spoke to my manager…was told, among other things, as a Catholic I am too sensitive. The hospice that was used by our facility is owned by a church denomination…so figure that! (Quoting the manager) “Honey, God wants them to get home to Him quick, so what we do here is not unlawful, there is no sin–if the denomination did not believe hospice was a good thing, would they be in this business? Now come on, you just keep doing the wonderful job we see you doing with all that sweetness and love, and I will see you tomorrow, okay?” …Oh and she says I am getting a raise with the new company and I shot back at her, “Is it 3O silver coins by chance?” Completely went over her head!
A friend of mine walked out about a year ago. A guy on hospice (cancer) was on heavy doses of narcotics and got out of bed. He fell, broke 4 teeth on top and was bubbling blood out of his mouth. Because he was on hospice, caregivers were not allowed to call 911…This happened at 8:30 pm. They picked him off the ground, put him in bed like nothing happened. We came on at 10:00 pm. They said: Mr. “X” fell, but he is fine, no visible injuries, etc. The med aide gave him his narcotic and he was screaming in pain and said he could not breathe…very distressed. So hospice was called and they said to give him another dose of his medicine. That was done…still screaming. Called again…same directions. Around 12:30 am, my fellow caregiver goes in. He screams into the radio, “I need someone up here right now!” I run out of the Alzheimer’s unit, tear up the stairs. It looks like a scene from the Texas chainsaw massacre…blood…awful… everywhere, like Mr. “X” had projectile vomiting while in bed. He is deader than dead. I damn near fainted. The other med aide came from my unit and ran to the restroom and threw up. We called the med aide from the shift before and woke him up. They had not told us everything or written down anything either. Seems he was complaining of pain around the ribs from the fall, but they just gave him pain meds and let it go.
So, hospice comes, mortuary comes, body goes. Next morning, the carpet was taken out, things were cleaned up–smelled like the mob did the bleach and paint job. A couple days later, the daughter from out of town comes to collect his stuff–the four teeth were on the windowsill. This woman was out of her mind with grief–was not there to say good bye to her dad. Because of a backlog, Dad was not cremated yet, so she had an autopsy done. Two ribs ripped into his lung and he bled to death. State was called…investigation started. Notes from that shift were missing mysteriously and they had cut the page from where the meds given were recorded so it looked like only a certain amount was given, put it together and photocopied it. Went over the signatures in black pen–made it look legit. Got caught because the toxicology report came back–he was so over medicated it was ridiculous.
My friend who was med aide that night talked to the director of the facility by phone (after the state had done its thing) about the situation and the cover-up. The director told her, “It was his time, dear. It is a good thing that he is gone. Our asses are covered because he was on hospice.” My friend had it, hung up on the director and walked out of the place at midnight during the shift and never returned. She woke me up at 1:30 am and told me what happened. I have nightmares to this day and can still see his open eyes and the mess.
Oh, I have more horror stories. We were giving a lady on hospice water instead of her liquid narcotic. No one could figure out why she was shrieking in pain. Someone was taking the drug and filling it back up with water with some Koolaid because it was red color. She died an agonizing death. We found out when the hospice nurse came to destroy the narcotics. She compared the open and unopened bottles. No one fessed up and no drug tests were done.
There will be no love lost when I leave and I will not even look back. There are a few that I feel I am still working there to show love and care, and when they go, I am outta there!
August 14: I have not slept. The guy across the hall died the next day during AM shift. The people who came in at 6 am were saying, “It’ll be a month before the c*nt (his wife) dies (they have her in hospice now, too)…because she does not like pain meds.” (I felt like saying, “You guys just cannot get enough of this, huh?”)
A lady on the other hall had a massive stroke and they are hoping to get her back. The facility has already talked to the Power of Attorney to put her in hospice. You would think they were giving away money the way they tout hospice and make it sound so nice.
August 18: It has been one HELL of a week! …This past week, I tried to be as kind and loving to my residents as humanly possible. But, when I got in my car each morning, I was bursting into tears because I felt guilty about leaving them.
In the past week, 3 good people were put down like dogs, but at least dogs get one shot of meds. These people got a dose every hour until they were killed. It is a slow painful death and they cannot fight back as the drugs suck the life from them by slowing down their ability to breathe and function.
Saturday am, I got violently ill–vomiting, diarrhea, and a blistering headache and sweating profusely. I thought I was having a stroke or a heart attack or something, but went home at 6:30 am and crashed. Took my temp–101 plus–and I was experiencing more symptoms…called in sick. I was in a feverish, painful dream state the rest of the night and felt like the Lord was allowing this to get me to finally realize that this job was literally killing me…I cannot go on like this. I am at peace with my decision and realize that healthcare has taken a turn for the worst–I just cannot participate in it. The people I am leaving behind will soon be dead also, and I cannot do a thing to stop it.
I am going to put my shirts in a plastic sack on the door of the Director and slide a Letter of Immediate Resignation under her door.
August 20: I turned off my answering machine. They were calling me every 45 minutes.
August 30: Applied at_____–a non-profit that has 20 houses and a main campus for people with moderate to severe disabilities. Had my interview yesterday, got the job offer…Happy to have gotten a job
Hastened Death through Morphine
“…this guilt rips over my heart.”
This email was sent June 10, 2013 to Hospice Patients Alliance: email@example.com
I write this with a very heavy heart…
I was raised by my grandparents. After a battle with stage 4 ovarian cancer (she lived 9 additional years when drinking Essiac), my grandmother said she was tired and wanted to pass away. Hospice was called in upon her last release from the hospital. I was asked to care for her by my aunts and uncles, who could not bring themselves to do it. I, of course, was happy to assist my grandmother as we were very close, more like mother and daughter than grandmother and granddaughter. I had made a promise to her years earlier to hold her hand as she died, because she was scared. I thought this was my way of keeping that promise.
I thought I would be assisting in making her comfortable only! However, after a brief few days of her being alert, her liquid morphine was increased. I was told by the hospice nurse, who came in every couple of days in the mornings, to steadily increase the dosage. When I expressed concern about the amounts, I was told that it was not harmful and that it would be inhumane to let her continue in pain. (How do you gauge pain levels when the patient is unconscious?) After this steady increase, she went into a coma after only a few days. One morning, I recall with clarity, when she groaned as though she were waking, I was told by the hospice nurse who was there at the time that it was a groan of pain and I should yet again increase the dosage! My grandmother clenched her teeth as I tried to administer this under her tongue. I was told once again to force the medication under her tongue! I did what I was told. After only a few days (maybe four to six) my grandmother passed away.
As I thought back over the whole experience a few months later, I was struck with the realization that I had killed my grandmother, who I loved so dearly! I have written logs of when each dose of morphine was given and I was certain that administering that much liquid morphine would actually cause the death instead of easing the pain. I have terrible days at times when this guilt rips over my heart.
Hospice should not be allowed to continue placing such guilt on unsuspecting family members who must then live with this knowledge!
Deciding if Medical Treatment is Acceptable or Not
The Pro-life Healthcare Alliance offers compassionate understanding, as well as medically and morally sound answers to anyone who calls or e-mails us for help in a critical medical situation. Sometimes we have to frankly tell the caller that their loved one may be in danger of being a victim of stealth euthanasia and they must move quickly to rescue the patient. At other times, we are able to assure them that the medical treatment their loved one is receiving is appropriate. The following case illustrates the latter situation. (Names have been changed to protect privacy.)
On 5/23/2013, Burt called and talked to Jo Tolck, Executive Director of Human Life Alliance, after finding HLA on the Internet. His wife Kelly and he were very concerned about her 96-year-old mother who fell earlier in the month and sustained a brain bleed. The doctor thought she would die momentarily, but she didn’t. She was sent home to her assisted living apartment and was able to walk and seemed to be doing better. She fell again, sustaining another bleed in a different area of the brain.
Kelly’s sister had Mother’s power of attorney for healthcare. Mother and family decided against brain surgery because she had type-two diabetes, weighed 90 pounds, and was not a good candidate for surgery. Also, she would have had to be transferred to a hospital in another town for surgery. She went home for one night and then to a nursing home on 5/9. She recovered her alertness, walking and conversing from 5/10 through 5/14. On 5/15, she was administered morphine and Ativan due to agitation. On 5/18 she went into a “sleep state.” She did not have any water after 5/17.
Mother received 5 mg of morphine eight times on 5/20, as well as Ativan 5 times. The next day she received one dose of morphine, no Ativan. On 5/22, morphine was administered 3 times, no Ativan.
HLA contacted Ron Panzer, the president of Hospice Patients Alliance and a member of the PHA. He spoke with the family and said that 5 mg is a very low dose of morphine, although, if it’s not needed, it could be problematic. His understanding was that Mother was agitated and in pain, so the medication seemed appropriate. Ron also said her respiration rate of 30-40 (normal is 12-20) indicated she was in the end stages of life.
The family was greatly comforted by their conversation with Ron.