Hospice Patients Alliance: Consumer Advocates

Case Seven

[Note: The following is the account given by an R.N. whose mother was placed in hospice against her will. The R.N. who was named as power-of-attorney for health-care decisionmaking was ignored and the hospice made a new POA document with a sibling of this R.N. Her mother was given multiple sedatives as well as morphine, Ativan and Haldol, though none of these were wanted and had been refused by the R.N. who had the POA.

Hospice Ignores Actual Power of Attorney
Gives Drug Cocktail to Assure Death of Mother

By Mary
October, 2010

It was not God's time...

As an RN, I spent most of my nursing career in the specialty of Labor and Delivery. With every new life brought forth, I stood in awe of God's miraculous work.

As a nursing student, I also had the opportunity to care for a middle-aged woman dying of leukemia. She had no hospice care or family with her at that time. She died as I held her, and knew this was a chosen assignment.

Many years later, my father-in-law was also dying in an upstate New York hospital. In 1993, he was placed on a hospice floor there. He was put on a morphine drip through the night and he left us the next morning after having a violent seizure, which was agonizing for my mother-in-law to see. These were her last moments with her husband, images she carried with her the 3 years she lived without him.

Two and a half years ago, I brought my Mom to Oklahoma from New York, so that she could spend time with her older sister who lives in Texarkana. My brother had placed my Mom on hospice care in the home for several months prior, since Mom had difficulty controlling her salt intake and would have episodes of leg edema that at times required hospitalization.

Mom and Dad regularly traveled back and forth between New York, Oklahoma, and Texas, and Mom had spent the better part of thirty years with us. Mom and Dad had seven children, but I was her main caregiver when she needed it. I brought her to Oklahoma for her aortic valve replacement six years ago, when cardiologists essentially wrote her off, in upstate New York. They told us she was "too high risk," for at that time she weighed 260 lbs as a geriatric patient.

Since I also have a disabled special needs son, who has bravely faced ten surgeries over the course of his precious life, I called my son's heart surgeon, who gave us hope. He told me to bring Mom to him, and God healed her through his gifted hands! She did beautifully, was so strong, and eventually over the course of time lost 130 lbs, which was a healthy weight for her.

In 2008, the hospice nurses in New York told us she had "less than six months to live." It wasn't so. In two months, I was able to nurse her back to health. Mom was very sensitive to medications, as is our son. She had other medical issues that some physicians don't address, even though these are common conditions: adrenal weakness, lymphedema, and pernicious anemia to name a few. Her blood pressure ran very low and I had to exercise great caution when giving her medications.

I also had our naturopathic physician treat her with the necessary nutritional supplements we lack as we age. At this time, the only service hospice was providing for us, was some of her medications. I provided all her care including monitoring her vital signs.

One day I had a problem with what the hospice social worker did. While I was attending to our son in another room, the social worker gave my Mom a "Do Not Resuscitate" form to sign (a "DNR"). I was not happy that she chose to give this to my Mom to sign without me being present in the room. The hospice staff loved to use the line "It's the patient's decision." I told the social worker after questioning my Mom in front of her, that my Mom did not understand what she was signing.

I explained to my Mom, to have IV fluids and nutrition withheld from her, was a very painful way to die, as was the case for Terry Schiavo. I also stated to both of them, that my Mom should not be signing anything without discussing it first with my Dad. The social worker said we could rescind the form anytime.

We called my Dad that night and rescinded the form the next day. About two weeks later, my Mom fell in the bathroom fracturing her tibia & fibula (right leg), after taking half of a sleeping pill. I knew as a nurse, that if that DNR form had been in place, some physicians wouldn't have worked hard to save Mom (or any of their patients with DNRs). This had been God's protection for my Mom.

She then spent several months recovering in the hospital and in rehab, requiring wound care and did well.

Hospice discharged her when she was admitted to rehab. A complication did arise just as we were about to get her back home. Her potassium level dropped and her heart rhythm started to fail. She then received treatment at the hospital, and a pacemaker was inserted. We were happy to learn that her heart's efficiency was back to normal. She continued to gain ground and had a strong immune system. After eleven months, she traveled back to be near Dad in New York.

Mom, like many elderly people, also suffered from some other conditions that were successfully treated. Still and all, she was a fighter at 80 years of age. At this point, her primary care physician wanted her to have rehabilitation therapy again.

My brother decided to have hospice care for her at his home instead. This was a major turning point for Mom.

Since he worked all day and believed that hospice would provide everything she needed, he felt this was the best option to provide for her needs. The young doctor from hospice was kind, and came to see her regularly. Mom felt comfortable with the nurse and aide who cared for her. I interceded from afar when I was able to over the phone, but the communication with my brother was strained.

I soon found myself also needing naturopathic treatment for exhaustion, from years of caring for our special needs son and Mom (when she had been here), along with so many other family responsibilities. In April of this year, my Dad required emergency surgery and four days later, our daughter underwent an emergency C-section with the baby being born early. At the same time, my husband and son had viral bronchitis, and I discovered the same week that my Mom was severely dehydrated from increased diuretics hospice staff had given her.

I was able to intercede via phone and changes were made. She was then admitted to the hospice palliative care facility where she stayed for four weeks. After that, she came back to my brother's house and we were able to hire a nurse for several months to help with extra hours of care for her. She certainly didn't fit the "six months" prognosis required to be in hospice. I know she would have benefited from rehabilitation therapy.

My brother (who lives out of state), came to help my Mom and Dad as well, while I helped family members recover at our home. After six weeks, I was finally able to get away and flew up to New York for three weeks. I met with the hospice physician and nursing team while there. The hospice physician was very honest with me, telling me he was nervous about meeting me, since he heard I was a "naturalist". He thought I was against my Mom taking any medication. I explained that I was not against necessary meds for her medical conditions, but that I also embraced nutritional and naturopathic supplementation that she needed, for all the above reasons. (Our son's heart surgeon led us in this direction for our son). The hospice physician said he was fine with her taking calcium and magnesium, vitamin B12 and vitamin D, etc., but that originally she had told him she didn't want to take them" because there were just too many pills to take."

I did want the hospice physician to take her off the Wellbutrin (an anti-depressant) and Klonopin (an anti-anxiety and anti-seizure medication) he had started her on several months before. She was having tremors, which is a side effect of the Klonopin, and she almost burned herself lifting a coffee cup. He was hesitant, since she had been depressed and he said it was difficult to get patients off these meds once they are started on them. (Looking back, my husband and I believe many of her neurological symptoms she had at this time, were due to the fact she was not taking the required vitamin B12 for her pernicious anemia & staff were not making it a priority to implement).

I asked the nurses if they did patient teaching with my Mom concerning her diet and salt intake. They said they did, but ultimately (again), "it is the patient's decision." When the hospice physician said my Mom was suffering from heart failure, I told him her heart had recently been evaluated in the hospital and it was functioning normally. I also suggested that tests be done to evaluate her heart if he really felt that was a problem. He said that if they did them, Mom might not meet hospice criteria and services would end.

At this point, I also discovered my name was not listed on the hospice's health care proxy form (where the health care power of attorney was named), only my brother's name was! Mom had previously specifically appointed me to serve as power of attorney (health care agent) and I had the legal documents to prove it, but the original documents were not given to hospice by my brother. Hospice to my knowledge, did not ask if any previous proxy was in place for my Mom & have indicated to family members in the past, they like to have someone local to confer with.

My other brother had been visiting nursing homes near Dad, looking for some that might be good for Mom, but was not pleased with the care he witnessed in any of the Medicaid facilities. Mom was requiring twenty-four hour supervision, and I believe again, it was due to her not getting her vitamin B12 supplementation for the pernicious anemia. If untreated, patients with pernicious anemia and vitamin B12 deficiency often develop dementia, but many get their memory back when B12 is provided again. The physician did tell Mom that if she got better she could go back to her primary physician and I do believe he was trying to help her get better.

Part 2:

What happens next is the hard part. By July, there was no extra money for nursing care in the home, and my brother wanted to get back home. He had been in New York three months at this point and was handling financial affairs for my Dad, including paying his bills. He didn't know what to do in light of Mom's ongoing care and was basically at a standstill.

About that time when he was hoping to return home, the Medicaid social worker called to tell him that a bed had opened up at the local hospice house. He felt this was an answer and shared with most of the family how wonderful this would be for Mom.

I was skeptical (because of my past experiences with hospice), but hospice houses are not available everywhere, so I really wasn't sure how this would go. I asked lots of questions, and my brother told me it was a beautiful place (only ten beds) and she could stay there indefinitely with one-on-one care. They told me she could even travel to come see us, working out details with the physician there. It sounded too good to be true.

The next day, my brothers packed up Mom and admitted her to this facility. She was afraid, because she never wanted to be placed anywhere but in a home with her own family. Family dynamics came into play and other siblings were unwilling or physically couldn't provide twenty-four hour care for Mom. I was torn, exhausted, wanting to have her with me, but also knowing I could not separate her from Dad again, as they needed each other. The real power-of-attorney form was also not being honored or respected, which had named me Mom's health care agent.

As I prayed and sought whatever way I could to help my Mom, it became apparent that I was in the midst of a major spiritual battle. One of the most damaging statements my brother said to my Mom when he admitted her there was: "This is where you're going to stay until the Lord takes you home."

Several days later, she told her sister over the phone: "They've put me here to die." When I heard this, I told her he should never have told her that; that she could get better and come see us and her new great-granddaughter soon with Dad. I called her often, and the first few weeks she began to tell me she just didn't feel right. She felt "off." Just a month before (when I saw her last), she still had much life in her.

I believe some of the beginning "hospice protocol" meds were already being administered to her. On the phone, the nurses told me she hadn't lost any ground the first three weeks, but at the same time I could hear my Mom in the background say she didn't want a medication she was being given.

I again questioned the nurse and learned it was Roxanol. The nurses didn't say they were giving her morphine, but that's what Roxanol is, liquid morphine. I then proceeded to get into a heated argument with the nurse. She told me she had to give it, because it was a standard ordered medication. I told her to write on her chart that the patient and the patient's family requested she not be given this. She insisted again that she had to give it. I then told her if I needed to do something legally I would, since we essentially had no rights where their protocol was concerned and that this was wrong.

That night, I faxed some important medical information to the nurse practitioner overseeing my Mom's care (concerning her meds, diet, and nutritional supplements). I was kind, grateful, and knew my Mom's medical issues better than anyone, having cared for her so many years. In the pamphlet hospice gives to patients and their families, it stated that they welcome any information from family, to better help the patient. I would soon find out: they didn't truly welcome it from me.

The hospice supervisor left a message for me the next day requesting a conference call with my two brothers and I. Instead, I flew to New York again at the request of my brothers to meet with the hospice team. At this point, my Mom was definitely showing signs of all the major side effects of the liquid morphine.

Staff members told us what I'd already figured out, that "she's not going to want to eat" "she'll be sleeping more during the day," "she will have trouble breathing," and "she won't make a lot of sense when she talks," so "talk with her while you still can." They said it was all part of the decline with her disease.

I knew as a nurse and knowing my Mom so well, these scenarios were not going to come to pass because of any hereditary disease she had, but because of the deadly effects of the drugs being given.

The meeting was very difficult. From the beginning, it was obvious the nurse practitioner disliked me and felt threatened by me, even though she had never even met me before! I shared my concerns and was direct and honest with the team.

I told them I believe older people are often "written off" too soon and that my Mom deserved the chance to get better. I told them, I wanted my Mom to go when God decided, not when a staff member expedited her death. They asked if I thought they were doing this and I said, "yes," I do, and that I had never seen this happen in any other area of medicine other than in abortion clinics and hospice, where a patient's and the family's rights were not honored.

The hospice staff became quite offended, and I clarified that I was not attacking them personally, just the hospice philosophy as I had seen it practiced. The nurse practitioner then said, "Maybe this isn't what you want for your Mom" and that "you should talk this over as a family." She did agree to stop the Roxanol at bedtime, but said my Mom's body would determine what they would give her.

At the meeting, my brother also defended his bringing Mom salted foods, which I reminded him would make her swell. I knew they would just give her even more medication for pain and the whole cycle would start all over. When the meeting ended, the nurse practitioner refused to shake my hand and unprofessionally even turned her back to me.

When the family talked afterwards, I received resistance from my brother who had been on the phone during the conference call meeting. He needed to defend his initial decision to put Mom in this facility. I wanted to move Mom to a hospital, but my brothers would not agree to work together with me, to do this. On my own, I tearfully visited a nursing facility near my parents' house. The nursing supervisor truly wanted to help me, but had no beds available until November. All things considered, I had no choice but to spend what time I could with Mom, come home, and try to recover. I was exhausted from the lack of sleep, the tension with the hospice staff and family, and the incomprehensible resistance to get even common-sense things done for Mom. This spiritual battle I was engaged in, was intense. I prayed with Mom and put all into the Lord's hands for the time being, trusting Him to give us strength to get through this.

As the weeks went by, it was more difficult for Mom to talk. I was desperately trying to gain some ground physically at home, as well as care for our special needs' son and beautiful new granddaughter. By October, Mom was asking to go to her own home in New York. Dad wanted this, too, but he couldn't do anything, because he was not on the "hospice-recognized" "version" of the health care proxy either.

I remember when Mom was in palliative care, the physician was not interested in what my Dad wanted, ... only what my Mom had signed. This wasn't right and only created family division, especially since the elderly can sometimes be confused and can be manipulated by suggestions from staff. "Why wouldn't a spouse have any input?" I thought. I questioned in my heart what we'd ultimately come to.
While home, I had no peace in my spirit and cried out in anguish to God for my Mom. I saw our primary physician who had cared for Mom over the years, and asked him if we could safely wean Mom off the Wellbutrin and Klonopin (meds for depression). He said that we could.

I once again faxed the nurse practitioner this information in hopes of turning Mom around, and also included medical information we had recently learned through our naturopathic physician, regarding our son and the pernicious anemia most of my family have, including myself. I requested that my Mom be given methylcobalamin (a specific form of B12 for the pernicious anemia). Without this, I explained her ability to metabolize medications and food would be greatly hindered and neurological damage would continue to ensue (mental clarity, inability to get out of bed, weakness, etc.)

My brother did try to give her the methylcobalamin that I had sent for her. It had been by her bedside, but she would forget to take it, or was too weak to take it on her own. The staff at this hospice agency would only be responsible for the medications. They saw no need for any supplements, which in this case was critical and something the nurse practitioner should have known.

As one might assume by the way all was unfolding, I heard nothing back from the nurse practitioner, but my Dad received a call from the hospice social worker asking him what funeral home we were planning on using for Mom. He was very upset and told her she had no business asking him such a thing and that he believed in Divine intervention. She then apologized to him.

At this point, with all the drugs they were giving her, Mom wasn't eating much and was definitely weakening. My brother kept trying to get her up into her chair and took whatever opportunity he had to encourage her to eat. She wasn't talking much and she was sleeping most of the time. After a few weeks, my Dad called and asked all of us to come and be with Mom. He said he wasn't giving up his belief that God could intervene. He just wasn't sure she was going to make it, since she was so weak. I packed once again and set off for New York with my brother (who lived out of state).

When I arrived at the hospice house, my Mom was not doing well at all. I had no time to assess her condition, for upon entering her room, the nurse practitioner pounced upon me. She was determined to prove everything I had shared with her was wrong. She claimed the blood test she ran on my Mom showed her B12 level was too high and she didn't want us giving her anymore B12.

I tried to explain what she did not know, regarding how the body stores excess B12 and that she needed to run an MMA test which is more specific. This was all research our naturopathic physician had medical documentation to support. The nurse practitioner just shook her head and then told me she would be stopping some of Mom's meds the next day and starting some others, and walked out of the room. That was the last time I saw her.

At this time, Mom was terribly dehydrated. My brother and I tried to get anything we could into her. She actually was able to swallow some pudding and ice chips, but we were scolded by an evening nurse who said that she couldn't swallow. I knew the game and they had to chart this to carry out their ending-life protocol.

Later, the nurse (the one that I had had words with over the phone) yelled at me. I expressed my concerns again about the medications being given and how they can kill patients. I explained that I did not believe she was dying from heart failure. I knew that her heart was functioning well and had recently been tested by the cardiologist, her last hospitalization. Then the nurse yelled at me: "She's dying!" right in front of Mom!

I told her that I believe in miracles, and she told me, "well, you're not going to get one." She also told me that natural treatments do nothing, because her grandson died of cancer and suffered without drugs.

It was becoming very clear to me that the more I fought, the more they would retaliate against me, and the more they were trying to prove me wrong. They had no respect for what I knew about my Mom's condition. They had no respect for my training and experience as an R.N. They had no respect for my values or my faith, and they certainly didn't care that they were hastening my Mom's death. They did not respect the sacredness of her life, to me, our family and to God.

I finally did obtain a list of medications my Mom was being given, which had been kept from me earlier. It took twenty-four hours to obtain, for my brother had to sign a release for them to give me the list. I suspect the staff had meetings discussing how to deal with me. I told Mom that I was so sorry this was happening to her, that I was fighting for her and would continue to fight for her.

When I received the list, I was absolutely appalled by what I read!

There were eight sedating medications (Ativan, Klonopin, Haldol, Methadone, Lortab, Restoril, Seroquel and Morphine) all being given at bedtime. She also had a Scopolamine patch in place. My Mom could normally only take half a sleeping pill, because of her normally low blood pressure. Her heart was very strong with her pacemaker, and her urine output was still adequate. They knew it would take this unbelievable lethal amount of medications to end her life. I felt as though I was in the middle of hell.

I called my dear friend who loved Mom, and is a nursing instructor. She has worked with hospice with her students (at a very different agency), and told me how she had never seen anything like this given before. I also called another friend who is an attorney, trying to see if a previous health care proxy (the original one my Mom wanted) with my name on it, could be a way I could get Mom into a hospital. This is what I wanted to do with my brothers months earlier, but they wouldn't agree to it.

At this point, I went down to the nurses' station and started calmly asking more questions. The nurse who had yelled at me earlier that evening became very nervous. She said only the hospice health care proxy was valid, even though I then told her I was listed on my mom's prior health care proxy. This original proxy was signed by my mother when she was in good physical and mental health.

When I shared with her what my friend had told me regarding the eight medications, she said they had stopped all her meds that night. I asked: "all her meds?" Then she said, "all but the Ativan, Haldol and the Morphine." In response, I asked: "so you've started the [death] cocktail, then".. I then asked where their license was posted and what agency they were under. She said the State of New York and that I would have to wait until tomorrow to get any more information that was locked up. She claimed there was no one I could talk to that night, and time was clicking away.

She then told me she was going to walk down the hall to ask my brother (who lived out of state), if she could call security on me. I was shocked and terribly hurt, especially when my brother agreed! Even though I had never raised my voice and had only asked questions because I loved my Mom, they called security.

The security guard came as I was kissing my Mom, with my Dad by my side. I told the guard I had done nothing wrong. He told me to take my time, that he didn't get involved with anything at the nurses' station and that he would even give me the name of the manager overseeing the facility that I could talk to. He was God's reminder that I wasn't entirely alone there.

I confronted my brother as he walked behind us out of the building. My youngest brother was on his way, driving from Texas. He was in total agreement with me in my fight for Mom. He called our other brother and the nurses' station in defense of me, as well. Mom knew my youngest brother was on his way and she was waiting for him...

That night, I remembered what my friend had asked me about earlier, concerning whether there was any kind of an advocacy group that could help me. It came to mind that I had read an article last year regarding Hospice Patients Alliance. I called my husband and he found their number. I called it at 3 a.m. and received a call back just an hour and a half later. It was the greatest blessing!

I was told that it was very important to implore my brother (who was on the hospice health care proxy), to get her transferred to an agency that would honor Mom's wishes; that any narcotic effect could be reversed with a medication, and that this was the best approach to try first. If not, I would have to get an attorney to show that Mom's wishes were that I be power of attorney, where her health care decisions were concerned.

I had prayed for a miracle and God had made a way to help my Mom. The next day, I didn't go see Mom, for I was working hard seeking legal advice, should I need a court order (which would take days), should my brother not be on board to move my Mom to a hospital.

God provided a young man working on my Dad's porch, whose mother was a nurse at a hospital I called. They even put me through to a Hospitalist who was very compassionate and willing to care for her. I then called my brother who was on the health care proxy but he again, still refused to work with me to get Mom to the hospital.

He told me, "no, I don't believe she can get better." It was what the hospice staff had told him. My heart sank, but I was still hopeful. My youngest brother was driving as fast as he could to get to New York, and he planned to attempt to convince my other brothers to move Mom.

He arrived in the early afternoon that next day (Sunday). He picked me up at the hotel I was staying at and when we arrived at hospice, all my family (Dad, and five of the seven siblings) were gathered around Mom's bed. The other two were present by phone. It was obvious she had only hours to live.

As horrific as it sounds, the truth is, this wasn't my Mom. She looked like a euthanized animal, dying from the very thing I fought years before - starvation and dehydration. My youngest brother told me later he felt as though he was watching someone on death row.

We all prayed together and talked to Mom as her breathing became more difficult. There was reconciliation with family members, something Mom had wanted for some time. The last four hours she had were ones of surrender for me. Many family members left the room for a time.

My youngest brother, myself and the brother who did not want her moved, along with his girlfriend, were with Mom. I told her, "I'm not leaving you!" I was determined to do spiritual warfare and not let the enemy steal anymore than he already had. I didn't allow one moment of somber silence to ensue, that she might be afraid.

I asked my brothers to hoist her up and I got into bed with her. I held her in my arms with her back against my chest. I put our special needs' son on the phone with her and he sang to her. My husband, daughter and Mom's sister and my cousin all talked to her, as well. Then I sang to her every song God gave me of praise and glory to Him.

I prayed over her and we just talked to God with every precious moment. She even received a call from Ron Panzer, of the Hospice Patients Alliance six minutes before she passed. This was a gift, as she knew people really valued her life and were fighting for her. My youngest brother said, "God told me that Mom is a picture of Jesus." She was dying for a bigger purpose, as Jesus did.

I felt as though my back was the cross. I know God shortened her last hours, as He did with His son. Like Jesus, she was a lamb that had been led to the slaughter. What our Savior said on the cross came to my mind: "Father, forgive them for they know not what they do." My younger brother cried and thanked Mom for waiting for him. That was when she took her last breath and gave up her spirit. The only comfort I could truly take at that moment was that she was no longer being harmed.

I don't know why God allowed her to go under these wrongful circumstances, especially since He did provide us the miracle I had prayed for. I only know He is not finished yet and can use it all as He sees fit to unfold His never-ending plan, for nothing can separate us from the love of Christ.

I leave you with a scripture the Lord gave me a short time before my Mom's home-going:

"Rescue those who are unjustly sentenced to death;
don't stand back and let them die. Don't try to avoid
responsibility by saying you didn't know about it.
For God knows all hearts, and He sees you.
He keeps watch over your soul, and He knows you knew!
And He will judge all people according to what they have done."
                                          Proverbs 24:11-12

I pray our story will bring hope to those who are vulnerable, and comfort to all who are suffering from this most traumatic and complicated grief. Know that you are not alone. -- Mary

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