Editor’s Pick
APRIL 26, 2011 9:31PM

Dad, I Really Didn't Mean to Kill You

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My father died last week after a long period of declining health. That’s what I wrote as the opener to my father’s obituary. And, it’s true. He died in a nursing home after a 10-year long health struggle after a cerebral aneurysm. Two years prior to that he suffered tachycardia and was fitted with a pacemaker. One of the tachycardia attacks would have killed him during a camping trip if not for the resuscitation efforts of a great rural rescue team. Today, I wish they hadn’t revived him. Then, he would have died outdoors, in the mountains he loved, peacefully, unconscious and unaware of approaching death.

His actual death wasn’t nearly so peaceful. He died in a semi-delirious morphine-induced waking dream state after he spent one week under hospice care.

Even as a kid, I dreaded the thought my father would ever have to be institutionalized when he was elderly, like my grandmother. My father was an intense, driven workaholic. He worried about every misspent minute and was never able to fully relax. He enjoyed his life though - approaching it in a hardworking manner. Even on our camping vacations, he woke up asking, “So, what’s the agenda for the day?”
So, when our worst-case scenario for my father played out – aneurysm equaling significant loss of memory, cognition and motor skills, and eventual institutionalization we all feared a terrible future for him. We imagined constant agitation and panic –my father ramming his wheelchair against walls in frustration.
But, oddly, things didn’t work out that way. The aneurysm and consequent surgery acted as a partial lobotomy. Gone was the drive, the agitation, the dissatisfaction with daily life. For the first time in his life, my father started to live in the moment. His temporary memory was on permanent reset. He repeated small tasks and thoughts endlessly. How forgot the big things. He got lost in his old neighborhood. He forgot how to walk.
Amazingly, throughout his slow decline over 10 subsequent years, my father managed to enjoy his days. He lived in nursing homes in three states as my siblings alternated duties as primary caregiver and healthcare proxy. His last three years were spent with me.
The first two years were pleasant for both of us. His nursing home was a large, homey Tudor mansion with a distinctly un-institutional feel, yet large enough for strong hospital affiliations. It was well recommended and maintains a four-star rating.
On warm days, I’d roll my father out in his wheel chair for fresh air and to watch the seasons change. He’d complain about the bumps in the old sidewalks hurting his back, but always with humor and a sparkle in his eye. His new brain caused him to relive moments over and over again. A former civil engineer, he’d gaze in wonder at the side of the nursing home and remark, “Wow, look at the brick work. They don’t make ‘em like that anymore.” Two minutes later he’d look at the same building and make the same comment. Over and over again, living a Groundhog Day – he’d learned to appreciate moments and small things – bricks, trees, sidewalks, food, television, coffee. These were all good things to be savored with relish, repeatedly.
Life started to decline fast for him in his last year. It started with a visit to a speech therapist. After a barium swallow test, she determined he was beginning to aspirate his food and drink. Afterwards he was given gelatin thickeners in all his liquids, and his food was pureed into a watery mush. Squash looked like carrots, which looked like butterscotch pudding, which looked like pureed chicken. Everything smelled the same. But, no matter, my father loved to eat and he ate the institutional gruel with gusto, often lingering over his food for hours until the next meal was served. Without independent locomotion, not even able to use the toilet on his own, food seemed to have become the biggest part of his day, and focus of his attention.
That’s why, after the first emergency visit to the hospital for aspiration pneumonia, I told the hospital doctor that I didn’t want a feeding tube implanted. He enjoyed eating. I wasn’t going to deny my father one of his last pleasures just to gain a few more years with him. The doctor agreed enthusiastically, “It’s great you feel that way. So many families want to keep their loved one alive no matter how crappy life has become for them. Feeding and breathing tubes are no way to live. Quality of life versus quantity is my motto.”  I had no idea how sick of that maxim I was to become. That day, I went home from the meeting feeling pretty good about my decisions on my father’s behalf.
The second and third emergency trips to the hospital were due to aspiration pneumonia, failing urinary tract system and constant infections due to implantation of pre-pubic catheter, in addition to alarming tachycardia.
The hospital doctors and nursing home staff were starting to initiate frequent “serious” conversations with me since I was my father’s legal health care proxy. Oddly, these conversations were starting to remind me of talks I’d been having with veterinarians as I nursed my terminally ill dog. The phrases were very common: “quality versus quantity,” “comfort care,” “palliative care,” “You’ll know when the time is right…He’ll tell you with his eyes.”
These are phrases vets use to gear a dog owner up for inevitable euthanasia when all treatment options become futile and the animal is suffering. My father’s caregivers used these same phrases yet; in America we don’t have legal euthanasia options for human beings. I was very naïve.
After these “serious” conversations I started to think to myself, “Well, what do you want me to do? What exactly are these people asking me to do?” At the same time, I knew my father’s upkeep at the nursing home was getting very burdensome for the staff. They were getting him up and out of bed less often, pressuring him to eat faster, not including him in group activities and card games. I had to prod the staff to get him into his wheel chair and out with the other residents rather than lying in bed in front of his own television all day.
Still, in spite of discomfort and loss of mobility, my father’s attitude was good. He still enjoyed his mushy food and the companionship of old women sitting around watching Lawrence Welk reruns and doing jigsaw puzzles.
After my father’s fifth visit to the hospital for the now-familiar aspiration syndrome, a nurse approached me and asked if I thought it was time for hospice care for my Dad. I was a bit shocked. I knew he was slipping fast, but I hadn’t thought him “terminal” yet. I envisioned him living on for a couple more years, sitting in the sun in the warm months, ensconced in front of the communal wide-screen TV for the cold ones.
Eventually, my father’s breathing seemed more strained and, for the first time, he seemed distressed by his physical symptoms. Two more nurses approached me about starting hospice care. This time I agreed. My mother found comfort in hospice care for her painful end-stage cancer and I hoped for the same for my father. I thought hospice would mean increased nursing care and more freedom to drink non-thickened liquids, as he seemed to be increasingly dehydrated.            
I met with a hospice nurse and social worker and alarm signals started to go off as I found the social worker artificial and patronizing. The intake nurse typed on her computer during our entire first meeting. I should have walked out. The hospice was recommended by the nursing home and is a large national corporation. Initially, I considered a small, community-run organization located across the street from the home, but figured it would be easier for staff to communicate with the recommended hospice. Mistake.
The hospice nurse said the standard “protocol” for someone in my father’s situation was Roxanol to reduce respiratory distress and Ativan to reduce anxiety. At the time, that made sense to me. I didn’t realize that Roxanol was morphine. During my father’s heart surgery he’d been given morphine and suffered agitation. And, here’s my caveat to anyone in control of the healthcare of a “terminal” person – go to the initial hospice meeting, write everything down, don’t sign anything, go home, research everything from to bottom. Then, sleep on it for a night or two before making such a momentous decision. I wish I’d done that.
Perhaps the months of hospital visits took a tool on my psyche. I felt I desperately needed to trust someone. I didn’t have the energy to do my usual blitzkrieg of Internet research. I just wanted to put my father’s care in competent, caring hands that would make him comfortable as his days wound down to the last.
That was the promise of hospice. This is what actually happened:  my father was dead within a week of the initiation of the hospice “protocol.” He didn’t die the calm, sleepy death I wished for him. He died restless and hallucinating from morphine. He was flushed and feverish for days - chattering at walls. He seemed terribly dehydrated so I poured thick McDonalds milkshakes down him every visit. In the end, the funeral director commented on how dehydrated he looked. I believe my father was never given anything to drink, except my milkshakes, after hospice was instituted.
I researched Roxanol and discovered it was morphine. I called hospice and demanded an immediate stop to the morphine and the Ativan. Still, the drugs proved fatal. The attending nurse said it was a “coincidence.” She denied the drugs caused the agitation even though my father never suffered it until he took the Roxanol. The hospice, which at our initial meeting had promised thrice-weekly phone updates and responsiveness to my concerns, was testy and intractable.
No, we don’t have doctor-assisted euthanasia in America. What we do have are millions of defenseless elderly people under hospice care being killed by “protocol.” The dictionary definition of protocol is “a written plan specifying the procedures to be followed in giving a particular examination, conducting research, or providing care for a particular condition.” I’m now finding out that the trouble with some hospice care is that protocol is adapted to patients with a “one size fits all” approach.
My mother with terminal cancer was a good candidate for hospice protocol of palliative morphine and Ativan. My father with chronic COPD was not. They both received very similar care although my father did not have specific or distressing pain. I’ve since learned the combination of morphine and Ativan can be rapidly lethal for patients with compromised kidneys, congested lung function, and dehydration. I believe hospice hastened my father’s demise.
Worse, is the suspicion the end result was intentional on the part of the nursing home and hospice staff. Not that they held ill will towards my father or any malevolent intent to murder him – they just view him and all the home residents as an assemblage – old people in pain, no longer able to do what they could when they were young, memory disabled – loss of youthful facilities equals suffering. And in a society obsessed with youth and health, suffering must be palliated. To death.
Clear in all the comments and discussion with nursing home and hospital staff is that they felt my father’s life was no longer worth living - I was somehow keeping him alive too long for my own benefit. More veterinary euthanasia-speak, yet that rhetoric was used frequently in convincing me to sign my father up for hospice.
In addition, advance directives are usually written when a person is healthy. When he was 60, my father wrote a directive urging us to forgo intubation and artificial means to extend his life. Young, healthy people can’t possibly imagine how much another day or another moment means when old and ill – regardless of chronic pain or discomfort. As my father grew older and sicker, each moment within his grasp became more precious.
I also started to feel differently when reading books by cancer surgeon Bernie Segal as I was going through my own serious illness. He cited a common negative attitude towards so-called terminal cancer patients by medical staff that suffering people couldn’t enjoy life. Segal countered by saying that if someone is able to wake up in the morning and enjoy one thing that day – a cup of coffee, reading in the sun, whatever – then that patient’s life was worth living and worth fighting for. I never forgot that.
I know my father had a few more days to enjoy in the sun. After a long dark winter, I wanted to get him out in his wheel chair a few more times to see the blooming flowers and trees and to feel the sun on his head. My siblings wanted time to fly here from various places on the globe to see their Dad one more time - to say “goodbye.” Those may seem like small things to medical staff operating on protocol-mentality.
Those moments were stolen from us and are an incalculable loss. If I could reverse time - if I had hindsight - I’d never subject my practical, reality-loving, detail-oriented father to final days of morphine-induced confusion. It’s unbearable to me – a life of beauty and resolve ending in a mirage. Of course, I’m painfully stuck in the present and I’ll carry this guilt with me into the future. I can only warn strangers to fully research their own hospice decisions before signing a life away.

I’m sorry, Dad.

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I went through a similar experience. Isn't it tragic that the last days of someone's life have to be so miserable? The guilt for a child is immense,and it is hard to shake the horrible memories.
I'm sorry for your loss and hope that you find peace.
Kathy, thank you, and I'm really sorry to hear you went through something similar. I'm just learning how common an experience this is. It is truly sad.
This is a powerful piece, Kathy. I'm very sorry for your loss, and I'm sorry, too, for the experience you and your dad had.
Ditto, ditto, ditto for my late husband with respect to morphine. I do think there's something about crossing the divide into hospice land that has a very negative effect for many, hastening their end. It's not that I didn't know my husband was going to die -- and relatively soon -- from cancer and related bodily shutdown, but he didn't go full bore towards death until he was put under hospice care at home,and no longer saw the same set of drs and nurses that he did while being actively treated for his cancer. He felt sidelined, marginalized, etc. Morphine was dreadful for him, and I had to fight to get continuation of Fentanyl patches, which his body was accustomed to. So many people I've heard about who have awful reactions to morphine. And of course the hospice nurses etc. simply act like you're in denial.

I have nothing but bad feelings about hospice philosophically as a result. Had he been treated as still being amongst the living, by the oncologist he'd been seeing, at the same office and nurses, he would have died more pleasantly. As it was, he ended up in the hospital, with one day of lucidity (back on the Fentanyl) before someone gave him Ativan and he never spoke again. I hate the protocols, I hate the SOP-ization of people at end of life. Sucks big time.
Unfortunately, very few people have the peaceful death we all wish for. Despite everything that we can do, it just is not the what happens. Peace to you, savor your good memories.
Wow. You makes some great observations about institutionalized care. I had my first experience in a long time in a nursing home last winter (visiting someone) and was astounded at the sheer amount of work it is -- like running a 24-hour infant daycare. I can see how the social worker and nursing assistants can get jaded, but that's not an excuse for taking anyone's life less seriously. I'm sorry this happened to your dad. Don't blame yourself, though, and make this any more painful that it already is!
Wow, I don't know what to say. You raise a lot of important points. Thanks for posting this.
I am sorry for your loss.
I feel your pain and am so sorry for your loss. I am in the process of getting my mom who has Alzheimers placed in a home. I am so sorry your dad did not have a
"good" death. Best, Erica
Thanks for your comments. I do feel better yet so sad to hear about many similar incidents. SynicalGirl, I'm really so sorry to hear about your husband's experience. I know what you mean about the hospice nurses treating you like you are in denial. I kept telling them the agitation started almost immediately after the morphine drip and they told me it was a coincidence and just "normal" terminal agitation. Finally, I was so frustrated at their inaction that I told them I'd consulted my father-in-law, a doctor, and he said to stop the morphine. Upon hearing the "D" word I got immediate results. I'm angry that the nurses didn't respect my request and didn't act until fearful, but anyway the result was no morphine at the very end and my father got a couple of hours of peaceful sleep. I'm completely soured on the hospice alternative.
this is very intelligently written but I think you're being too hard on yourself.
I too lost my Dad in similar circumstances but as a health care worker I know how series aspiration is. People to choke to death often have aspirated food or liquid into the larynx instead of the esophagus. It can cause an embolism.

Actually Dad passed away quite peacefully at home with hospice care.
I don't believe your Dad had to be in the state that you described. Most Hospice caregivers are very in tune to the family.

Have you seen the HBO special Kavorkian? It's an important story and I am very much in favor of this option.

Some seven years ago I had to let go my beloved Morgan horse.
He passed onto Rainbow Bridge with his head in my lap. I cry to this day for him. I believe that dealing with loss and quality of life is a mile stone in ones life. There is no way to prepare oneself for these difficult moments.
Thank you for sharing your story.
I am sorry you had this experience. I've worked hospice and although the meds are few: Roxanol (morphine- pain relief), Ativan (decreases agitation), Atropine (to decrease mucus), and Scopolamine patches (nausea/ mucus build up) ...all of these medications are there for the patient's comfort, and only for the patient's comfort. Usually oral fluids are offered, but after a certain point, mouth swabs are all that is tolerated.
I have enjoyed working hospice, and have only had one experience with a family that did not have what they felt was a "good death." My best experience was my first one- a family where 2 of the kids were nurses and 1 was a doctor. The words "I have a doctor in the family" generally doesn't scare us, because usually it means you are more informed.

Hospice is palliative care. You have to have 6 months or less to live in order to qualify. Dying is also not always what you might wish for for a loved one. They might say or do things in delirium (which happens often during this process) that is completely out of character and scary. I'm sorry you were traumatized by the experience. Hospice should be the opposite of that ideally. It is usually.
I want to thank you for writing about your Dad's experience with hospice care. My husband's parents had similar experiences when they were in their final days. Your memories of your Dad are precious, especially the "so, what's the agenda for the day?" Reminds me so much of my Dad and the man that he was..thanks for sharing. -R-
My mother's hospice care took place in the same Alzheimer's facility that she had been in for a couple of years. They had a hospice waiver. That's a good thing to look at if you're putting old folks into skilled nursing or assisted living. Can they do the hospice right there with visiting nurses.

Hospice started out using "Brompton's cocktail", a mixture invented in a British hospital that included heroin or morphine, cocaine, alcohol and a sedative. It's been tweaked since then. But no one should be give an drug that they have a bad reaction to. When I go to the hospital, which happens a lot, I get an orange medication alert bracelet put on. It's a basic thing. I can't believe a responsible hospice group never asked about drug sensitivities. That's appalling. I'm sorry you had to watch your dad die like that.

It's important to follow your instincts about a place, and not argue against your dislike for a place by citing its advantages. I did that once, and my mom got injured there after only four months. You think you're making a decision for the best, but if you guess wrong, you never get over it. You should, you did it for the best, but somehow you never do.
Very well articulated! The funny thing about these situations is that we don't want to learn the hard details before hand and we act as lemmings through the dying process of loved ones only to regain clarity afterwards and live with a degree of remorse and what could have been...

Thank you for helping me gain focus of the realities of life for this day!
It's tragic that some hospices are no longer providing the type of care Dame Cicely Saunders envisioned when she founded the modern hospice movement in London, England. The "quality of life" ethic has replaced the sanctity of life ethic, so people are hastened to death with medications that are not needed or wanted.

Giving morphine to a COPD patient (like your father) is a way to assure a rapid death, and any nurse or doctor would know that COPD patients are extremely sensitive to opioid medications. Morphine does not "help" breathing, it depresses the respiratory effort, slows it and can cause it to stop completely, especially in COPD patients (every package insert for morphine warns about using it with COPD patients).

There is what I call "stealth euthanasia" being practiced in our country, hastening death without the family or patient being made aware of what is really being done. Real hospice does not hasten death, but many hospice staff do so, having been trained in a way that betrays the real mission we all expect: care, relief of symptoms and a support to allow us to interact with our loved one until a natural death occurs in its own timing (not a hastened death).

I write about this steath euthanasia in an online book at:

I'm so sorry your time with your father was stolen from you!
I'm sorry for the loss of your father. My own father is 89 and still out and about, so I am thankful. However, having lost my mother to a similar situation I understand the horror...then watching my husband go through stuff and die I'm no longer feeling so hopeful about the end. Having said this, please don't be too hard on yourself.
Years before my beloved stepmother was dehydrated and starved to death in hospice, I had read about terminal sedation. During my stepmother's last hospital visit, we spoke on the phone. She was communicative, and told me she was going home. She had been in the hospital numerous times before due to complications from Multiple Myeloma cancer. This time, as many others, she was rushed to the hospital due to internal bleeding. She was given a complete blood transfusion so had stamina but suffered pain from the cancer. After her death I learned that my father and half sister who were with her had been pressured for 3 days to allow hospice to come into the home to administer a pain management protocol. They were told they would get her comfortable and so on. She had eaten solids and drank that morning. Later that day when I called to see if she was home, my Dad told me that hospice was there and they gave her something for the pain, but she went into a coma. He was told though, that she could still hear them, but couldn't respond. My heart almost stopped because I knew that they were beginning terminal sedation. I didn't tell my father that because it would have added to his grief and anxiety, and I knew he felt there was nothing he could do. He and my sister were in a powerful state of denial at what was taking place before them. Many family members began to arrive there, but I was 4 hours away. My brother arrived here to pick up my mother and stepfather to take them to visit with his relatives, and then my brother and his wife would go to my stepmother's bedside. Despite much pleading with me by my relatives, I refused to go. I knew I would not be able to keep silent about what was going on. She was given oxygen (!), but absolutely no nutrition or fluids for the entire 6 days. My father called me in the middle of this and said the family was having a difficult time because she appeared to be suffering. They had been told that she wouldn't suffer and would be dead in 2 days. This was going on the 4th day, and her grimaces were alerting the family to her distress. She did not want to die, the nurse said she was fighting it. She was not allowed to say goodbye to her loved ones, or they to her. They were lied to. I will never get over this and I also try to warn others of this euthanasia campaign in our country. The word euthanasia sounds almost benevolent so I won't call it that. It is murder.
Cathy, I'm so sorry to hear what happened to your stepmother. I don't understand at all this protocol of dehydration and starvation. I kept asking nursing home attendants if my father had been getting food and thickened water during hospice. They said "Yes." They out and out lied to me. I'm so glad I brought him in milkshakes and pudding. He'd always perk up afterwards. I had no idea they were dehydrating him purposely until the end. I was shocked. Still am shocked. This was never discussed with me. I signed on for hospice thinking my Dad would get MORE food and water, no be deprived of both. It's just awful. Again, I'm so sorry for what happened to your stepmother. Families rarely seem to be properly informed about hospice protocol. It's a shame. Not the family's fault at all, but a shame.
I worked in hospice care for 25+ years, at the begining we were all volunteers. Back then the administrators were usually clergy, the nurses mostly nuns, and it was a very compassionate group who not only cared for the patients and family, but for each other. We just had a reunion a month ago and all the staff have remained very close all these years.

Hospice became a medicare option and the small community hospices were taken over by larger ones. The Administrators had a business background and as more patients came on, the staff no longer got to know one another.

Fast forward to now. The last hospice I worked for was owned by a corporation that ran hospices in several states. I was hired over the internet. The same corporation owned the nursing homes where our patients were, and the pharmacy that supplied the medications we used for the patients.

I saw horrible abuse, people with stage 3 or 4 ulcers, untreated stuck to their sheets, left in urine soaked beds for long periods of time. The nurses wore blinders and the aides were terminated for reporting abuse. "Making assessments of patients was not on their care plans".Complaints to DPH, HHS, even the AG's website went ignored.

I had a patient with dementia, we were enjoying a cup of coffee and fressh baked cookies while singing along to Frank Sinatra. She no longer recognized her daughters, but she was in no pain and still very much alive. However the daughters questioned if it was alive enough to justify $3,000. a month for the assisted living. The nurse was shocked when they brought it up. She said it made her sick to her stomach to think daughters would even think that. However the clinical director put her on a morphine pump and started terminal sedation. The nurse quit, I was terminated for reporting it to DPH.

A sad ending to a 25+ year career that I loved so much.
That's incredibly sad, and I suspected as much - that with hospice as a medicare option people are not really supported to comfortable living until a "natural" end, but hurried towards that end. With my father, I felt it, but didn't have any facts. I'm learning much now and it's just awful. I wish I'd known exactly what was going on and I would have pulled him out of hospice immediately. Thanks so much for sharing your experience and I'm really sorry you had to leave a career (calling) you once loved.
Morphine is cheap and SOP and I think it keeps being used because of it. I do think there's an element of euthanasia too often, under the covers.
Thank you very much for writing this helpful and moving piece. If I had seen an article with such vital information a year ago, my mother might still be alive and getting enjoyment out of life.

My mother’s horrifying death in hospice was strikingly similar in a number of ways. Here are some additional things I wish I had been told to watch out for before she was put in hospice:

1. If the hospice staff claim that they are only going to administer a “tiny dosage” of morphine and/or Ativan. “Tiny dosages” may be raised very quickly without informing family members.

2. If the hospice staff dismisses any previously documented allergic or adverse reactions to morphine, Ativan, or any medication by claiming that the reaction was “not a real allergy.” In my mother’s case, the hospice claimed that she did not have a “real allergy” to morphine because she didn’t experience a rash as part of her adverse reaction.

3. Check well-known web sites where patients rate and review doctors, e.g., www.ratemd.com and www.vitals.com. While the reviews may or may not be one-hundred percent reliable, these sites can provide information about the hospice doctors that is not available from more conventional sources.

4. If the hospice dismisses the patient's or family member’s description of a previous adverse reaction to a drug that the hospice wants to administer. This may take the form of staff making up stories to explain away adverse reactions. In my mother’s case, the hospice nurse claimed that my mother’s distress and unintelligible cries were her “reliving her memories of being in a concentration camp.” My mother was never in a concentration camp.

5. If the hospice (or nursing home that is urging the family member with power of attorney to put the patient in hospice) is in any way playing family members against each other.

6. The hospice staff are obligated to abide by the written hospice contract. Don’t assume they will abide by anything they say or promise you or your loved one (no matter how seemingly sweetly) regarding treatment that is not in the actual written hospice contract.

7. If the nursing home is urging hospice care even when the most recent medical tests show no further (or little) recent deterioration in the patient’s condition.

8. If hospice staff make a fuss about what family members should and should not talk about at the patient’s bedside but the staff themselves make inappropriate comments at the bedside that are likely to be upsetting to the patient.

9. If the nursing home claims that the patient has expressed a wish to die but the patient has not said as such to family members.

10. The nursing home or hospice ignores any behaviors or statements made by the patient that express the patient’s desire to keep living.

11. Ask to see the nursing home’s and hospice’s notes, medication lists, and patient history. The nursing home and hospice should be perfectly willing to immediately provide a permission form for the family member with power of attorney to sign and then promptly provide copies. (My mother’s hospice did pull several shenanigans to avoid giving us the records when this request was made.) In my mother’s case, the nursing and hospice records noted that she had expressed a desire to not prolong her life during her last hospital stay more than a month earlier but did not note that this occurred only when she was in distress for one afternoon. They did not note that it turned out that, at that time, she felt that she was too much of a burden on her family and that she felt much better after being told by family members that she wasn’t. They did not state any of the numerous instances that showed her desire to live during the rest of that hospital stay and since that stay. There were other discrepancies in the record as well.

12. The nursing home staff frequently comment to the family member with power of attorney how much the patient is “suffering” even though the patient is not in serious or severe pain and is not taking any serious pain medication. If the staff is talking about the patient’s “suffering” (as in life is no longer worth living) much more than the patient herself is, particularly if the patient is mentally alert and capable of talking to family members, then it’s important to question what is really going on.

13. If the patient has a lung disease or condition, find out why the nursing home and/or the patient’s doctor is suggesting hospice, rather than additional treatments. In my mother’s case, temporary (a few hours) use of oxygen masks during her recent hospital stays had been of enormous help.

14. If the patient is mentally alert, make sure she fully understands what hospice care is beforehand. I repeatedly explained beforehand to my mother that hospice care meant that if her condition got worse or if she contracted another illness, the hospice would only try to make her more comfortable and not actively try to make her better. Her repeated response to me was, “You don’t understand. They’re not like that here.” (As it turned out, not only did they not try to make her better, she was essentially tortured and tormented due to the adverse reaction to the morphine they insisted on giving her and the refusal to give her fluids and nutrition once the morphine and Ativan reaction set in.)

15. If you are a family member without power of attorney, don’t expect hospice staff to necessarily respect any of your concerns or properly answer your questions. I was used to dealing with hospital (non-palliative) staff who were generally very appreciative of any additional information I could give them regarding medications and health and personal history. The behavior of the hospice and nursing facility staff was the complete opposite. If you don’t have power of attorney, you have no power.

16. If the hospice or nursing home staff automatically shuts out, discredits, or threatens family member(s) who question the necessity of hospice or question hospice treatment. (They may do this in a number of ways. I think a common practice is misusing convenient psychobabble: the family member is in denial; she’s angry because she does not want her loved one to die; we know that this is hard for family members to hear, etc. In regard to threats: when I asked the nurses to see about lowering the dosage of morphine, they actually threatened to kick me out for “interfering with patient care.”)

17. Non-profit, highly-rated, and even church-affiliated facilities are not necessarily immune from these abuses. Particularly if the hospice is located within or affiliated with a nursing home and/or a continuing care retirement community, a facility may want to “move the patient to the next step” for reasons that have little or nothing to do with the actual welfare of the patient or resident.

18. You can make complaints to your state’s health department while the patient is in hospice. The office that handles complaints for hospices in my state has a 1-800 number as well as a mailing address and fax number for written complaints. If I had realized this at the time, I would have called them the first couple of days my mother was in hospice.

19. I made a complaint to my state’s department of health after my mother’s death. The department responded by conducting an investigation. I was able to get a copy of the investigation report, which included information that I had not had access to before. This information was very useful in making another complaint to a different office within the department of health (which the department of health has taken further action on). Your state may have different offices for making complaints against the hospice itself, the hospice doctors and the hospice nurses and different regulations may apply to each.

If the patient had at any time actually expressed a wish to die but no one noted why she felt this way. What may seem to be the obvious reason may not be the real reason, e.g. the patient may be experiencing physical discomfort but the real reason is that she feels she is too much of a burden on her family.
I am so sorry for your loss. I lost my Mother a year ago, August. She was home on hospice care. When I heard that she was being given methadone and morphine for pain, I was very concerned because she had COPD and everything I read indicated that these drugs could adversly affect her respiration. Long story short, she was continued on both meds. at increasing doses, which I believe hastened her death - she was basically comatose towards the end. I feel a horrible guilt as I helped administer these medications as instructed by hospice when I flew to help with her care. Other family members thought it was the right thing to do to make her comfortable, but I will never forgive myself and will live with this guilt for the rest of my life. I truly believe we would have had much more time with her if she wasn't unnecessarily being overdosed. I think hospice knew that their service would hasten her death and in our worry and concern for her, we let them convince us. Mom, I miss you so much and I hope that you can forgive me, when I see you again someday.