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Questions to Ask a Hospice Fact Sheet (PDF)

The Earth-Shattering Shift in Medical Ethics

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The new bioethics divides human beings into two categories: the “wanted” and the “unwanted.” Like their brothers and sisters who are aborted at the beginning of their lives, the chronically or terminally ill, disabled, and elderly are in danger of being killed simply because it is inconvenient and/or costly to care for them.

When a loved one is referred to hospice or palliative care, be wary and stay alert! Better yet, evaluate beforehand with the following checklist:

Questions to Ask a Hospice Before Admission

Vulnerabilities in Hospice Care

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The Department of Health and Human Services Office of Inspector General (OIG) monitors the care provided by hospice programs.

OIG reports that some Medicare beneficiaries were seriously harmed when hospices provided poor care or failed to take action in cases of abuse. Get more details here.

If you have any concerns about hospice care that a loved one is receiving, go to: Know Your Rights, Take Action for help in addressing these issues.

To help prevent the possibility of concerns with hospice care, before choosing a hospice, use the Hospice Questions found under Resources on this web site.

HERE’S WHAT I LEARNED WHILE HELPING A FRIEND IN HOSPICE

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HERE’S WHAT I LEARNED WHILE HELPING A FRIEND IN HOSPICE:

1. A patient’s advance directives and treatment wishes may be disregarded.
2. Alert patient advocates at the bedside 24/7 are essential.

By Joan
In 2017 I had the privilege of being asked to become my friend John’s healthcare agent. (An “agent”, sometimes called a “proxy,” is someone legally appointed by a person to make his medical decisions in the event he is unable to make his own decisions.) John’s health had been declining for several years. Ultimately, he received a terminal illness diagnosis. (Please note that I am in no way suggesting individuals should wait until that point to assign an agent; this should be done when one reaches the age of 18!)
John had a twofold reason for choosing someone other than a family member. First, we shared the same faith, and he trusted that I would adhere to the tenets of our faith. Second, John was worried about being terminally sedated (i.e., rendered unconscious, deprived of food and fluids, and dying of dehydration and starvation). I was aware that terminal sedation is an increasingly common threat in hospice and would be alert to it.
John’s family was not pleased that he named me to be his healthcare agent. In retrospect, I believe part of their concern was that I would request “heroic” measures to keep him alive at all costs. This, of course, was neither John’s goal nor mine; John simply stated he wanted to die in God’s time and not be “hurried along.”
Scare tactics

When John began to need more help, he received in-home hospice care. The nurse seemed to be caring and respectful of John’s faith, but she made statements (reported to me by John) that caused me to question if that was truly the case. Also, the hospice social worker (Paul) became very angry with me for not persuading John to sign a DNR/DNI (do-not-resuscitate/do-not-intubate order) early on. All of the usual scare tactics were employed (“They’ll pound on you, they’ll break your ribs,” et cetera).

I attended a meeting at which Paul again attempted to persuade John to sign such a document. When John declined, Paul literally shouted at him, “When you’re dead, you’re dead!” I suspect he really wanted to yell at me. Perhaps Paul was under pressure from his employer, but shouting at a patient to scare him into signing a DNR/DNI order is a tactic no professional should stoop to using. (John told me those same words were used on him during an earlier meeting.)
John and I had discussed this document and had agreed he would authorize it when he felt it was time. John was very capable of speaking for himself; therefore, it was not my role as his agent to contradict or pressure him.
The pitfalls of a POLST
Another issue of contention was John’s advance directive. This had been filled out and witnessed well in advance of John entering home hospice care. The hospice staff wanted him to sign a POLST (Physician Orders for Life-Sustaining Treatment). This form has dangerous wording and loopholes and it overrides a person’s previously signed advance directive. I explained the pitfalls of such a document and John refused to sign it. Again, the staff was unhappy with me.
John eventually reached the point of needing 24-hour care. Lacking the funds for such care at home, he would need to enter a hospice facility. Paul previously found a nonprofit hospice that did not charge for their services and John was agreeable to entering. The catch was that he couldn’t even get on its waiting list without signing the POLST. Attempting to protect John, I amended the POLST, but the hospice would not accept the amended form.
It should be noted that on the day before John was admitted to the hospice facility, he was still using a walker to navigate around his house. Once admitted, a catheter was inserted and, to the best of my knowledge, he did not leave his bed again.
During the initial meeting at the hospice, I told the nurse doing the intake that I did not want a psychotropic drug administered to John since he was not combative nor was there any other indication that it was appropriate. (This was in accordance with advice I had received from several individuals in the healthcare field, one of whom has a doctorate in nursing and over a decade of direct experience in hospice.)
This request was ignored, so I met with the doctor who was doing rounds later that week and voiced the same request. Again, the request was denied. I subsequently met with the medical director who, after disagreeing with me, finally ordered a different drug. I later learned he merely exchanged one psychotropic drug for another.
I attempted to revoke the POLST they forced John to sign and to have him treated according to his advance directive, but he died before that was accomplished. His death occurred a mere two weeks after admission to the hospice facility.
Unlike the family members mentioned in a previous issue of HALO’s newsletter, who were able to be with the patient 24/7 (https://newsletter.halorganization.com/2019/03/a-family-may-be-only-hospice-team-needed), John’s family did not agree with my concerns and did not feel the need to be with him around the clock.
All of this has shown me first-hand the importance of the patient advocacy program HALO recommends (https://newsletter.halorganization.com/p/patient-advocacy). It takes only a few people who are willing to become patient advocates to help ensure a patient’s safety and comfort.
Note from HALO: Signing a POLST, or any other advance directive or medical order, should always be voluntary. Also, according to the national POLST website (https://polst.org/about), “The POLST form can be changed or voided at any time. It is up to the patient what they want their POLST form to say.” Nevertheless, many hospices, hospitals, and nursing homes disregard federal and state laws and regulations regarding advance directives, DNR orders, and patients’ rights. And, as in John’s case, a healthcare facility may use a POLST to override a patient’s advance directive and even disregard a competent patient’s wishes regarding medical treatment.
The powerful healthcare system is difficult to stand up against, but we must do our best, as Joan did, to protect patients unable to protect themselves. At least they will know someone truly cares about their welfare.
To learn more about the POLST document, read “ADVANCE DIRECTIVES FOR HEALTHCARE, Part Two: The Dangerous POLST Form” at https://newsletter.halorganization.com/2018_11_12_archive.
As this case illustrates, healthcare providers may wrongly disregard a patient’s advance directive. Nevertheless, an advance directive in which you appoint an agent (proxy) gives you an ally who will do his or her best to express your wishes regarding medical treatment and to defend your best interests. Also, a life-affirming advance directive is a great tool for educating everyone involved in decisions regarding a patient’s treatment and care.
For information about the medical directives HALO recommends, click on this link: https://halorganization.com/pdf/LAMP.pdf. The Life-Affirming Medical Proxy (LAMP) document is available for download there. The introduction to the document includes a list of “Life-Affirming Principles for Medical Decision-Making” which HALO highly recommends discussing with your agent (proxy), family members, and healthcare providers.

A FAMILY MAY BE THE ONLY “HOSPICE” TEAM NEEDED

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A FAMILY MAY BE THE ONLY “HOSPICE” TEAM NEEDED

By Amy Holtan
My 83-year-old father, Jack, broke his hip on October 7, 2018. Sadly, he passed away on December 12, 2018. This is a brief summary of Dad’s last two months, highlighting the unsettling issues we faced with Hospice.
I was, by turns, very concerned, confused, frustrated, angry, and even completely shocked at the way in which my dad’s last two months of life were handled by health care providers. I am forever grateful to Jo Tolck (vice president of HALO) for guiding us through this difficult time, especially for her assistance in the last few weeks of Dad’s life. I can’t thank Jo enough for her commitment to respecting and honoring the God-given dignity of my father and helping us discern the “right” and “wrong” in a very broken care giving system.
There were good caregivers, and I certainly do not want to negate that. We are very grateful for the care and very hard work of one doctor and many nurses in getting him well enough to leave the hospital. However, the strong and continual pressure exerted on my family to allow my father to be unnecessarily sedated was very distressing. In addition, we were unduly pressured to “find a hospice organization” before we left the hospital.
With calm determination, we did take charge.
Prior to his hospital discharge, we attended a “palliative care meeting” where we were told his situation was dire, and that we would “need” to decide on hospice care. That was confusing, because he was going back to a long-term care facility. Why did we need to choose a hospice when care would be provided by the facility’s staff? Plus, three members of the family were “tag teaming”; he would never be alone. It was hard enough to face everything we were going though without being told “you need to do this.” Despite our objections, we were each handed a generic Hospice and Palliative Care book provided by the hospital. Who had time to read a book?
The HALO fact sheet “Drugs Commonly Used in Hospice and Palliative Care”(https://halorganization.com/pdf/drug-sheet.pdf) was an invaluable guide for our family. My father had dementia. Previously, when Dad had surgery, we had learned which drugs were not appropriate for him due to his dementia and age. The HALO fact sheet helped us work with the medical professionals to ensure that he received appropriate treatment for pain and agitation when needed. At first, the medical people at the long-term care facility were not cooperative. Nevertheless, with calm determination, we did take charge.
We asked for a print out of Dad’s medications and their dosages so that we would be aware of everything that was being given to him. We preferred that his medications not be “scheduled” and wanted his chart to state that his medications were to be given “PRN”—that is “as needed.” We made decisions based on what we observed and what he said his pain level was. Had he been overly sedated, he wouldn’t have been awake to let us know if he was in pain. Also, we wouldn’t have seen him smile and heard him talk or laugh! In fact, Dad rarely experienced pain. At one point, we asked him several times an hour to make sure. He would say no or shake his head. Most of the time, his facial expressions would confirm that he was not in pain. When his respirations started to increase, we knew he was uncomfortable and addressed it. When we saw that he was thirsty, we spoon fed him thickened liquid (he was at risk of aspiration). He loved the thickened “ice cream,” as we called it!
Because of my father’s multiple serious health issues, we were aware that his life was fragile; we were certainly not in denial of this. However, I saw my father as living and present to us. Every moment was an opportunity to care for him and show love to him; to try to understand his needs and do all that we could to help him.
There was obviously no need for hospice, but the pressure mounted.
There was a care conference within 48 hours of his return to the long-term care facility. This time we were given a list of Hospice Organizations around the Twin Cities (Minneapolis and St. Paul, MN). The staff members at this meeting firmly intended to get this hospice idea into our heads and hoped we’d make a decision in the next 24 hours. We had no intention of choosing one, but out of curiosity I called a few of them. I immediately saw the red flags. From the article “Interviewing a Hospice Agency” in Informed (https://resources.humanlife.org/pdf/informed.pdf), a publication edited by Julie Grimstad (president of HALO), I asked question 3: “Is your Hospice agency pro-life?” Not one person even knew what “pro-life” meant, regarding an older person like my father.
The hospice agencies I contacted uniformly answered that their visits were primarily once a week, for about a half hour at a time. Really? How do you get to know anything about a person, let alone one who may be sleeping, in that short amount of time? What kind of “comfort” can you really give him when he is a stranger to you? What are you going to do for him anyway? I was completely confused by all of this!
The most shocking event happened the day before my dad passed away. The last nine nights of my dad’s life, I slept on a cot by his bed. Usually, by mid to late morning, my mother would arrive at my dad’s room and I would go home for awhile. That day, I just happened to stay later. A woman representing a well-known hospice organization walked into the room. I was sitting in the corner. She looked startled when she saw ME there. She focused on my mother, without even a glance at my father lying in bed. My mother was in a vulnerable position at that time. She had the slight belief that hospice could possibly do something “good” for my father. Hospice today is not at all like it was in the past. My mother was clearly confused, and this woman was putting pressure—albeit “compassionate”—on my mother to sign up for hospice. My mother, clearly unable to make a decision, asked me what we should do. Her dear husband of 58 years was dying.
I thanked the woman and told her we were not interested. Then, suddenly, a thought occurred to me, so I looked at her and asked, “What ARE you going to do for him?” The woman was obviously surprised at my blunt question. She responded that hospice knows more about pain control. I pointed out that Dad wasn’t in pain, but only became a little agitated at night sometimes. His agitation was relieved by a low dose of medication. There was obviously no need for hospice. She left the room, but I later noticed that she was still sitting outside with a nurse, possibly waiting for me to leave so she could approach my mother again. I stayed with my mother and father until I was certain she had left the facility.
That situation told me all I needed to know. This hospice representative had intended to speak only with my mother. She had tried to create a division in the family, knowing full well that other family members and I did not want hospice. My grieving mother was lost and confused. She needed her family to help make decisions. In the end, Hospice did not show any respect for my father’s life or for his family’s wishes.
We had many beautiful moments with my father before his death.


When my father passed, I was so grateful to be at his side. I believe he passed into his eternal home in our good Lord’s timing; peacefully—without being in a drug induced unconscious state. We were able to communicate, hug him, laugh and cry with him almost up to the day of his passing. We had many beautiful moments with him that I will never forget.

NOTE: For assessing a decision on hospice, consider this resource: Questions to Ask a Hospice Before Admission

RECOMMENDED READING

Stealth Euthanasia: Health Care Tyranny in America

by Ron Panzer
Hospice, a wonderful, authentic mission to serve those at the end-of-life, was shown to the world through the works of Dr. Cicely Saunders. However, a secular utilitarian counterfeit has mostly replaced what people expect when their loved one is admitted to hospice care. You may be surprised to learn that one “arm” of the euthanasia movement literally took over most of the hospice industry and is carrying out involuntary medical killing without admitting what they are doing. Reports of these widespread killings are censored by government officials and the media, so people are not prepared to defend their family members. This is “stealth euthanasia,” and it violates the ethics we expect from those who are trusted to care, not kill. The Stealth Euthanasia book reveals what has been hidden from you and explains what is happening, and why and how it is happening. The knowledge shared in this book will help you protect your loved ones!
To download Stealth Euthanasia, click on this link:
http://www.hospicepatients.org/this-thing-called-hospice
Symposium Proceedings “Medical education in the shadow of ‘stealth euthanasia’” among Catholics: Are we fighting secularism or heresy?
by Dr. George Isajiw
The Linacre Quarterly 82 (3) 2015, 210–216
To kindle your interest in reading this exceptional paper, we offer two quotes:

Committing stealth euthanasia by withholding food and water from patients who are not dying but merely have their ability to eat and swallow impaired, such as victims of stroke, dementia, Parkinsonism, etc., is only the tip of the iceberg. It is often claimed that a PEG (percutaneous endoscopic gastrostomy) tube does not offer any benefit because it does not cure or improve the disease process itself. These patients are inappropriately referred to hospice as if they were, in fact, dying. And of course, it becomes a self-fulfilling prophecy when they die from dehydration and malnutrition.

Now let’s turn to the big question which needs to be confronted: Why is the practice of stealth euthanasia just as common in many Catholic healthcare institutions as it is among secular healthcare providers? Why is the withdrawal and withholding of ordinary medical treatments routinely approved by Catholic ethics committees and justified by many Catholic ethicists and theologians? And what can be done to reverse this trend?

https://www.tandfonline.com/doi/abs/10.1179/0024363915Z.000000000131