I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
The ones second guessing you have not walked in your shoes or shouldered the responsibility. Do not allow their words to linger on your mind or heart! God bless!
I am sorry that your hospice experience was so regimented and drug oriented, but it doesn't surprise me, and I'm appreciative of the time you took to provide this caution.
Her three daughters who made the hospice decision jointly felt like we knew what hospice care would be, as my oldest sister pioneered the field, working as a hospice RN in the ‘80s. I greatly admired her dedication to the field and what it was doing. The emphasis back then seemed to be more about dying with dignity and avoiding “heroic measures” and less about medicating the dying into senselessness.
The hospital that had saved mom’s life many times is supposedly a non-profit. It used to be a Presbyterian hospital with a great reputation. They are now part of a conglomerate that offers hospice care and somehow manages to claim non-profit status, but I know what corporate smells like when I smell it. I agree that those in the trenches don’t profit like shareholders but virtually every single hospice employee I met was robotic and determined to drug my mom. Relentlessly determined. She never complained of pain. Not once. When I told the nurses she was not in pain they never wavered from their insistence that they needed to manage her pain. When asked, they could not support their claim she was in pain and never even tried to. I know corporate programming when I see it.
And I know bottom line concerns when I see them. No medical facility anywhere is so sufficiently staffed that a paid employee could sit by my mom’s side and spoon feed her the water she needed to stay hydrated after all the Lasix she was given. It is much more expedient to keep dying patients so drugged they can’t ask or cry out for water. They are going to die a lot sooner if they are not given water. That’s just a fact.
I was by mom’s side 24/7 to respond to her every need, so there was no need to keep her drugged to relieve staff responsibilities. She was not crying out or fitful. The only motivation that the conglomerate nurses could possibly have had to force opiates on her was to expedite her dying, and the only reason for that has to be financial. I’m sorry, but it’s time the public wakes up to the fact that medicine – and now dying – is big business. With hospice care, sure, the facilities, conglomerates, and pharmaceutical companies make more money the longer the patient stays alive…but who is picking up the tab? That’s who is calling the shots.
Instead of keeping mom at the conglomerate hospital with the nice room, we returned my mom to her nursing home where she was beloved and well cared for. Because of the 4th of July holiday we were never given hospice papers to sign at the hospital, although we verbally agreed to use the hospice program offered by the hospital’s conglomerate who would “manage” her hospice care at the nursing home. I did not understand that I was agreeing to have ALL of my mom's medical decisions made by a nurse who was not on-site and that no other nurse or doctor could evaluate her for non-hospice care. We will never know what caused the swelling in my mom’s jaw. The hospice nurse never looked in her mouth or palpated her neck. She only offered opiates or Ativan.
Morphine is a poison that destroys lives across the planet every day. Just because the dying can’t articulate what it is doing to them doesn’t mean that they want it. I think in many cases it is given because it is easier on the living…and easier on the bottom line. I'm not saying it shouldn't be administered to those in pain and those who ask for it, but I am saying that there needs to be much more public dialogue about this so families in my position can make more informed decisions.
The NH took good care of her. Hospice added another layer of attention and special care. Her 4 daughters made 10 to 12 visits each week, on all shifts.
I believe that every bit of care and attention contributed to her quality of life. As it turned out, I think it all contributed to the length of her life, also. Hospice care certainly did not shorten her life.
It's been my experience that, when pain relief has been prescribed by mom's doctor, it's liberally offered: "Are you in any pain?" Here comes a pain pill. Perhaps it was the same with your dad.
You said it all to your dad, yes? He's in a better place, yes? Let it go is my advice to you. Hospice workers are caring and compassionate people. Your dad died peacefully. That you weren't able to say a final goodbye, in the scheme of things, means little. He knew you loved him. He knew he was dying. (Even if he DIDN'T know, he STILL knew.)
One's body does the best with what it has. It's a remarkable machine. Even when death is inevitable, one's body will fight-fight-fight. One minute he was able to handle the toxins his liver couldn't metabolize, the very next minute his body was on overload. Day. Night.
Your dad wasn't eating BEFORE he went into hospice. His body was giving up the fight. Again, he went peacefully and pain-free. Be thankful and let it go.
As you conclude "follow the money".
I am assuming that this hospice was "for profit" Their one objective is to make money and if this is sucessful their top executives recieve the same over inflated pay checks and bonuses that executes in welknown major corporations enjoy. Horrible, sad and any other way you care to describe it but true. There they sit in the luxury of their top floor office overlooking the beautiful ocean planning their next corporate trip to a warmer climate next January. While the top brass enjoys the perks of sucess the worker bees (nurse) are not exceptionally well paid and may have an excessive patient load which may delay their visits.
All that being said, they are able to attract many patients with the facilities they are able to offer. Most people are unaware what hospice means and at the time they consider it they are dealing with a loved one's approaching death so are unable to do the necessary research.
All the medications you describe are commonly used in hospice care and for very good reasons. You do not share what your mother was dying from and why her jaw swelled so suddenly. However she was in a facility within a hospital and her regular care was being administered by nurses in the facility. Such an emergent condition would appear to merit faster action and not waiting six hours for the arrival of a hospice nurse. In her defense a hospice nurse has to triage her calls and a patient with acess to care within a facility would not be as urgent as a man who has become unmaneable and is beating up his 89 year old wife.
I can not say whether the intention was to speed your mother's death or not and am very sorry you feel so badly about the treatment your mother recieved. As with everyone else nurses also have their personal views on subjects and the nurse you spoke to may have had strong objections to certain treatments and had previous bad experiences with the practices of this particular hospice.
Finally in closing there is a very big difference between a for profit or not for profit hospice. For profit is a business just like any other and may be good or bad. A not for profit is a registered charity and must follow the rules just as any other not for profit. As most of the patients are Medicare or Medicaid the hospice has to follow the regulations set out by these two entities. The level of renumeration provided by a not for profit is far lower at all levels therefor the nurses etc attracted to this work are most interested in providing the kind of loving care they would want for their own loved one.
As a RN who spent the last ten years of a long career in nursing as a hospice nurse I can only say how sorry I am that you are so distressed by the way your mother's life ended. Try and take comfort in the fact that she had her loving family at her side and was ready to meet the Lord. Blessings
It also gave me a wonderful room in the hospital’s palliative care unit in the where I could access unlimited little pots of thickened water. After we moved into this room I sat by my mother’s side and patiently spoon fed her thickened fluids for four or five hours until she finally became rehydrated. With water and without morphine she came back to life. She ate small amounts of food and answered questions appropriately. Because she was in a state of pharmaceutically induced encephalopathy she could not fully track conversations but she didn’t look like a corpse any more. She also stopped moaning once she was rehydrated and the morphine was discontinued.
Nothing any doctor, any nurse, any professional anywhere can tell me will ever persuade me that it is humanitarian to give morphine instead of water to a patient who can still swallow. It was clear that the minute I signed the hospice papers that I reduced my mom to “living corpse” status. The change shocked me. I was told that we could have anything needed for comfort but when her jaw began to horribly swell, completely disfiguring her lovely face, it was over six hours before the hospice nurse came. The staff nurses told me they could do nothing but give her morphine, dilaudid, and Ativan – which she emphatically rejected. It was the worst night of my life. The only thing that prevented me from withdrawing her from hospice was my mom herself, who by then had the seen a beautiful destination and did not want anything delaying her arrival there. Including morphine, dilaudid, and Ativan. She wanted to meet her maker undrugged and I was determined to keep her undrugged. But what a battle it was.
Later a non-hospice staff nurse at the nursing home validated my Herculean efforts to honor my mother’s wishes by confiding that morphine causes patients to have “bad dreams” and moan and toss. When I told another staff nurse that I believed that the hospice nurse deliberately delayed arriving because they wanted my mom to die ASAP she said it was true – she had seen it before.
This is a long entry and I take the time to write it because this is a strange new world we live and die in. I cannot speak for patients who are in agonizing pain, but for patients like my mom, and suzy05’s, who are not in pain, there is no justification for morphine or other opiates. If I had it to do over again I would never sign hospice papers for my mom. There is a distinction between not taking heroic measures to prevent death and expediting it with sanctioned drugs. Anyone who thinks that hospice care isn’t being guided by corporate principles needs to follow the money.
My only real input here is that - NO, the hospice nurses didn't rush my grandmother's death at all. I was able to take her home for the last 2 weeks of her life, and largely tended to her day and night by myself, her hospice pain meds were never used, and she passed during the night... that morning, hospice was called in to the house, and the nurse remarked she was very surprised my grandmother passed as quickly as she did.
So, no... not rushed, not meddled with, not anything. Hospice was on hand, but no one ever administered meds or "interfered" in any way. That was my experience.
The death of a parent shakes the very foundation of our lives. It is natural for both you and your brother to feel vulnerable, alone and out of control at this time. No one wants to lose their parents, even if our parent was far from perfect. But that is not how life was designed. We are meant to spend half of our lives with our parents and half of our lives without them. As you work through the grief process you will come to realize that this loss has been profound, but that your father left you strong enough to face the future. And through this loss, you experience one of the defining moments in life. I want to recommend that you get this book for both you and your brother:
amazon/Losing-Your-Parents-Finding-Yourself/dp/078688651X/ref=sr_1_2?ie=UTF8&qid=1389030744&sr=8-2&keywords=on+losing+your+parents
Please, don't take on guilt that is not yours and don't let this turn you and your brother against each other no matter what. You are both part of your father and you are meant to share that bond for the rest of your lives. Be patient with each other. You both are sharing a defining moment in life. It's a difficult transition, but you can get through it together and most of all, grow in ways you never thought possible.
its snowing like a mf and id give anything to have her here baking bread today.
I'm sure some Hospice employees do rush a loved ones death.But,if the family didn't keep a open eye on what that Hospice employee was doing to their loved one.The finger points where?At Hospice the employee or the non open eye of the family?Some people feel better in them self by pointing blame to others to ease their own guilt.But,if you didn't attempt to prevent?Where else does the guilt point other then your self?Sounds harsh but,the truth.
If you say you did all what you could do?So,be it.No need for guilt if you attempted to prevent with a open eye.
I will agree one some things you all stated.
My Father in law was diagnosed with lung cancer.The first day of chemo I drove him and his wife to the doctor.He walked into the doctor's office to his chemo on his own.I waiting out in the car while he was doing his first chemo.His wife was with him during the chemo.2 hours later his wife comes out to the car to me telling me I need to help him to the car.I was shocked what condition he was in after that chemo.He walked in to the doctor's office.I had to carry him out.From that first chemo he never got any better after that.Down hill he went.To this day thinking about it now.That first chemo I feel is what put him down so fast.Before that day of that chemo he was walking,talking,joking.I think that first chemo just woke the cancer up.They say once you crack it open your done for.
I remember when Hospice started coming to help him.I see what you mean by saying Hospice drugs people up to their death.I think it's true in some or most conditions.And yes,I feel Hospice does rush their death.We couldn't talk to the father in law.He was too drugged up.But,I'm sure if he wasn't all drugged up he would of been in alot of pain.But,who really knows how much pain he was in really?He was ok until Hospice and cemo came involved.I feel if he didn't have that chemo.He would of lived a little longer I'm sure of it.From what I seen the Chemo and Hospice put hin down fast.
(Did Hospice rush your loved ones death?)
That's a harsh sounding topic to create.And cought me off guard to react on it.
I can't speak for all Hospice employees or all Hospice clients.It varies by employees and clients.I know by my experience of dealing with Hospice I had no problems what so ever.In fact without Hospice our family wouldn't know what to do.My father in law died of lung cancer,My Uncle died of Throut cancer.Hospice was their for both of them and did a amazing job.When my Mother & Father died back in 1992 & 1999 we never heard of Hospice.We had no help.I was 21 yrs old when my Dad died.Both could of used Hospice but,then that option wasn't around for us.Again sorry for your loss.If your family thinks your the cause why your loved one passed so soon because you got Hospice involved?Their thinking wrong.And good for you ,you did so.I sure wouldn't want to be the one to give shots to my parents during thier passing time.I wouldn't want to remember that for the rest of my life.That's why there's Hospice.To do what we can't or don't want to bare to do.
Off the wall example,
When your dog dies.It's not best for you to plant your dog your self.It's best to find someone else to do that for you so they say.But,I planted every dog I had my self.
Dogs are just like your family.I have a 12 yr old black lab not doing good.Loss of eye sight,bad hips.Everyone tells me to put it down.That's the answer for everything they say is put it down.Well,I know my dog.He isn't ready to go yet.I'll know when it's time.Until then,I will enjoy him.If only a dog could talk lol.
Hospice and palliative care may be one of the greatest gifts you can give someone who is terminally ill. Furthermore, hospice is covered by Medicare, and provides services to the surviving family.
What exactly is "over-medication"? Hospice workers know best. Hospice workers are aware that over-medication may give rise to homicide charges, so they generally do not try to "overdose" a patient. We currently have a case in my state, Pennsylvania, where a caretaker daughter, a nurse, was so charged for over medicating her father. At the other end of the spectrum, I recall enjoying a football game with a relative when his wife came in the room, turned off the T.V. and threw his beer down the sink. As she was leaving the room she said "well you told me in your advance medical directive to 'pull the plug' when when your quality of life depended on machines and ingested fluids." Since family members so often miss the mark about what is proper medication, it is a decision best left to experienced hospice workers.
For those families not sure about whether hospice is appropriate, it might be a good idea to have someone review the medical records and offer a second opinion. The authority of N.P.'s under the laws of each state are different, but in some states a Gerontological Nurse Practitioner can be retained to review medical records and have a candid discussion with family members at a reasonable cost or covered through insurance.