Posted on 12/19/2016 6:19:00 PM PST by Captain Peter Blood
It has been a very emotional roller coaster type of week for me and my two siblings.
Last Monday night my Father was taken to the Emergency Room and was diagnosed with severe dehydration. For the last two months he has been eating less and less and has made know to all of us that he wants to die.
He is 93 and two weeks ago we found out that he has imminent heart failure. His heart is just worn out and at his age he will not be getting a heart transplant. He had bypass and heart valve replacement at age 80 and has gotten another 13 years to be with us.
His best friend from childhood died almost three weeks ago, they were close and had been since they were about two or three years old. His decline became rapid after that and now here we are in Hospice care in the hospital. I must add after his friend died he got a Strep Throat and a bad chest cold. He just has no fight left in him.
He has deteriorated to the point that he can hardly move and his skin is so sensitized you cannot touch him without him crying out in pain.
I don't know what to think or what to do. My Sister has been caring for him for the last two years while he has been living with her and since she and my brother have been with him more more than I have, I felt my Sister should make some of the day to day decisions. She has been close to him since our Mother died 36 years ago.
While all of us don't want him to suffer needlessly, I have some very serious Moral and Ethical problems with the Hospice Protocols. It is and/or can be a drawn out process. On one hand you are starving someone or you are allowing someone to be over medicated by Morphine to ease the situation and "Help" them along on the journey.
There just are no real answers and it seems everything is in a huge grey area. You wish that is was mercifully over quickly but it doesn't work that way.
I would appreciate any experiences or feedback from those of you that may have gone through this.
My Father was a very early Trump supporter and told me at least a year ago that his biggest wish was to live to vote for Donald Trump and see him win. Well he did do that.
I so want those dreams about my dad. I want him to come into my dreams. It hasn’t happened yet.
that being said, think of what YOU would want when you are a frail old man of 93?...you think you would want a tube feeding?...hands tied so you don't accidentally pull it out...maybe skin sores from the constant diarrhea...
no...that is not what most of us want...
IIRC, a person can hop on Hospice and hop off it at will, if they choose....we've had Hospice pts state they don't want to be on Hospice any longer and come in and get IV's and antibiotics...then go home, and decide to go back to Hospice.....so I don't think its like you don't have choices...
if your dad's skin hurts, he probably is uncomfortable all over....wouldn't it be better for him to get enough meds to stop the pain?...let him rest and sleep well?...
as far as "starving"....well, you dad can eat and drink whatever he wants....there's no rules on that....however if your dad is aspirating food down into his lungs, that leads to difficulty breathing and pneumonia, so the doc and nurse might suggest not feeding him nor letting him have a lot of liquid....again, drs have let pts try whatever foods and liquids they want, even with the perils that might entail....
do not be afraid......mostly, your father can have whatever he wants...his body is failing, you're not failing him.....this is life....
I’ve been with many people when they crossed over. I lost four family members in the past year, three of whom were in my home 24/7 in hospice care. My mother at 97 yrs I cared for 2.5 years, my mother in law at 88 years I cared for about a year, and an aunt at 72 years went quickly in 1 month. I was with each when they passed over and each one was different. All were very beautiful experiences. (I do not believe in nursing homes)
Be an advocate for your relative as hospice tends to over medicate. I try to walk the fine line between no pain and clear mind, which is not always possible. (Check the meds to make sure the meds are correct. Errors are frequent and can cause discomfort.)
Actual transition time can vary from a few hours to a few weeks, depending upon circumstances. One of the key factors is the person’s will. My father told me a year in advance the weekend he would die.. Easter Sunday morning on his sister’s birthday. He passed on the day he predicted a year in advance.
Do not fear the process. It is beautiful, especially if you are allowed to experience the bright radiant light and bliss due to holding the person’s hand when they pass over. With my father they actually allowed me to cross over with him... but made me return. With my father in law I saw his older brothers who had passed previously come to greet him in the portal.
Death is much more a graduation and beginning than an end.
Having died and fully crossed over to Heaven myself in 1988 from meningitis, I assure you there is nothing to fear in the process. In fact it is just the opposite. After being with God 100% and experiencing His powerful Love, I didn’t want to return to my body. After I did return to my body I was depressed as I missed His Love so much. I seek it always and often experience it in daily meditation and prayer. It is much harder to learn to Love life here that to want to cross back over....
God keeps telling me to “Love Him in all the people around me.” But it’s not the same.
I cannot emphasize enough the importance of your prayers to guide your loved one through the dying process. Prayers of gratitude for the time you had with the person are the best. Prayers should be directed toward God and not the person who is crossing, except to guide them to look toward God for their strength.
If the person’s body temp goes real high like they have a fever (actually hot to the touch), but yet there is no infection or reason for a fever, often it is the Holy Spirit cleansing the soul prior to the crossing over journey. The heat is the Holy Spirit burning off any obstacles to Love in their soul. It is a very beautiful process.
This happened to my mother earlier this year for three weeks prior to her passing. Three weeks no food and one week no water, but yet she glowed and continued bowel purging every day. Twelve hours after she passed I was very surprised when I put a nice long sleeve blouse and long pants on her body, and there was zero rigamortis!
” My sister did not allow hospice to administer any morphine..she did it herself and only sparingly.”
Excellent advice. My experience is that most nurses, not just hospice, tend to over medicate.
When the discomfort from pain in the physical body becomes too great, a person often will let go and leave. I prefer to guide a person in prayer to look toward God and they will exit easily as they forget to hold onto their body.
Just last month my aunt died in my home in hospice care. She told my wife to get me right away. It was 2:30 am and I had just walked to the kitchen. When I entered the room she rolled over and extended both arms high in the air toward me and yelled to me, “Take hold of my arms and pull me from my body.” I explained that is not how it is done as she was trying to do the equivalent of jumping off a diving board while still holding onto it tightly.
I guided her to relax in prayer and within 5 minutes she crossed over. There is no fear in letting go of the physical body when God is lifting you up out of it.
“No one is ever over medicated to ‘help’ them die.”
Not true, sorry to say.
I’ve been through the process many times over the past twenty years with several different hospices and many different nurses. Each time I was the primary caregiver 24/7.
I must say that some of the most beautiful souls I have ever met are hospice nurses. That is the norm... But not all fall into this category. Last month I threatened to cancel the hospice agency and switch to another midstream in the process.
Also important.. Do not assume that just because they are incoherent and cannot communicate with you that they do not hear and comprehend what you are saying to them and around them. They do hear you.
When a person has a clear mind, I spend the last hours doing forgiveness work and healing wounds in the person’s soul. Remember the parable of the vineyard workers. Even those that just work at the last hour receive the same reward.
“There’s really nothing you can do, except keep them comfortable, clean and pain-free, and let them know that you love them, and give them permission to go”
Excellent advice...but add Pray.
Do not be surprised if you find yourself constantly checking to see if they are still breathing. This can be especially frustrating with people who stop breathing for several minutes and then start up again. Just relax and allow the process to unfold.
Prayers up for your dad Leslie. Been through this twice with my parents. They both had at home hospice. Advanced found to late Lung Cancer.
Find out if you father has a Living Will and a DNR. You are bound by those factors. He should at least be on a IV for dehydration, and a feeding tube if he has permitted it. No one should die that way. It is what they did to Terry Shivo.
Pain med at the least amount, but know pain meds tend to shut the bowels down. With him not eating stool softeners are a necessity or Miralax if you can get him to take it. Be sure you choose the Hospice wisely some will assist with a OD of pain med if patient lingers to long.
Spending time with him and giving your sister a break is the best present you can give to them, keep telling him how much he is loved and you’d like to have him here as long as you can. That he is not a burden to any one, but a blessing in your lives. That he’d be horribly missed if he left you. Be sure all the grands tell him too.
In Christ we ask for healing and peace, Amen.
“the last time my grannie went into the hospital, she said “It’s time to go home”
In 2000 I was caring for my 89 yr old father while he had prostate cancer. His prostate had enlarged and blocked the ureter causing severe pain. As he was getting in the car with me to go to the hospital, he turned to my mother and said, “I may not be home again. You know those nurses at the hospital are really cute.” He never lost his sense of humor right to his departure several months later at home.
“Pain was her biggest challenge, and hospice uses drugs that Drs will not prescribe to other patents. This helped...”
“To answer you on the morphine, I felt it was a godsend for my Mom, as it saved her life.”
Thank you for sharing that. Being in excruciating pain is not conducive to healing, nor does such a state of being offer incentive to continue on in life, knowing that just through death’s door is total relief from pain. It is good to hear about people who have “graduated” from hospice, as this shows just how good hospice care can be, and that such shouldn’t necessarily be equated with death.
We have been threw this twice and our experience was similar.
All I can add is to emphasize that witholding fluids is to actively kill the patient. Medical professionals treating the elderly are taught to seek this outcome. You don’t have to approve of it.
Pain relieving drugs are a Godsend. They don’t kill the patient with them. If anything undermedicating them is more the problem. If they are in pain then you know they are undermedicated. Talk to the physician about this.
God bless you in this tough time.
Agreed that not all nurses are great
Medications are driven by pain levels and docs. It may seem that too much is being given but it is not given to kill people. If someone is doing that they get arrested
My Dad died this year at age 90.
He had a good life and I feel he is with the Lord.
I visited a good friend in a hospice the day before he died.
I helped him write his last letter to the editor about political corruption in our community. We recalled the Mayor.
May God’s Peace be with him and your family.
Lost my FIL three weeks ago due to complications of dementia
You must speak to the medical staff to understand hospice- it’s one of the most compassionate and medically sound programs - not a program to drug up your loved one. But pain medication may be needed to relieve pain!
“Medications are driven by pain levels and docs. It may seem that too much is being given but it is not given to kill people. If someone is doing that they get arrested.”
I agree with you 100%. In reality, there is a fine line between suppression of pain and suppression of the respiratory/cardiac systems. My experience is that in hospice situations, most/but not all nurses err on the side of pain relief and if the respiration stops, so be it as it was a peaceful process.
It is a double edge sword as the pain can also cause muscle contraction and create difficulty breathing. Thus morphine can help by relaxing the muscle tension but also hurt breathing function.
In addition to relieving pain, morphine also effects:
Respiratory depression - The breathing mechanism can become suppressed in response to low blood oxygen. In healthy individuals, as blood oxygen falls and blood carbon dioxide rises, the drive for breathing increases. However, morphine suppresses this drive in the brain, potentially causing this very dangerous side effect. Respiratory depression is more common with higher doses.
Sedation - Named after Morpheus, the Greek god of dreams, morphine is one of the most powerful sedative opioids.
Skin changes - Morphine may lead to the release of histamine in the skin leading to warmth, flushing and urticaria or allergic eruptions across the skin. Skin may appear cool and clammy and a severe chill called hypothermia may develop.
Gastrointestinal side effects - These include nausea, vomiting, abdominal cramps and constipation. Opioid receptors for morphine are present in the gastrointestinal tract and their activation may lead to a slowing of gut movement, leading to constipation. Long-term use leads to severe constipation. In addition, morphine stimulates the vomiting centre of the brain causing nausea and vomiting. Morphine and codeine cause more nausea than other opioids. There may be drying of the mouth as well.
In the last case I worked with, the patient was on high doses of morphine long term relating to hip replacement pain. There is considerable research showing that opoids actually increase the cancer growth. (http://www.uchospitals.edu/news/2012/20120321-opioid.html)
The long term use possibly caused Transitional cell cancer of the kidney (renal pelvis) or ureter which was masked by the morphine until it spread to the bone, lungs and liver resulting in a very quick uncomfortable death process.
I send prayers for all of you.
Your last case is an interesting one. Opioids are indeed s mixed bag
My daughter recently had a stage four lung cancer patient. She was giving him large amounts of fentanol and dilaudid through out her shift He passed the next morning but even that really wasn’t helping much
God releases us all into his arms . It is an absolute certainty that we all die. Peace to you and your Dad.
Dilaudid is actually hydromorphone, a morphine derivative. It’s usually administered in the home as a liquid sublingually but through IV in the hospital. The digestive tract destroys its effectiveness so it is best absorbed through the membranes of the mouth.
The major hazard of hydromorphone is dose-related respiratory depression. Simultaneous use of hydromorphone with other opioids, muscle relaxants, tranquilizers, sedatives, and general anesthetics can cause a significant increase in respiratory depression, progressing to coma or death. Taking benzodiazepines (such as diazepam) in conjunction with hydromorphone may increase side effects such as dizziness and difficulty concentrating.
Fentanyl is about 100 x stronger than morphine and is fast acting for a short period of time. It is used for immediate pain relief. Fentanyl may produce more prolonged respiratory depression than other opioid analgesics. It’s also used as a general anaesthetic, but is dangerous due to its high potency and must be watched carefully.
My background is more neuroscience than medicine so I am weak on knowledge except through using it with family members under hospice care.
Earlier today I sent a copy of the following to my wife who is an MD concerning an August 31, 2016 FDA announcement for Black Box Warning update in the PDR.
Posted 08/31/2016
AUDIENCE: Pharmacy, Internal Medicine, Psychiatry, Neurology, Family Practice
ISSUE: FDA review has found that the growing combined use of opioid medicines with benzodiazepines or other drugs that depress the central nervous system (CNS) has resulted in serious side effects, including slowed or difficult breathing and deaths. Opioids are used to treat pain and cough; benzodiazepines are used to treat anxiety, insomnia, and seizures. In an effort to decrease the use of opioids and benzodiazepines, or opioids and other CNS depressants, together, FDA is adding Boxed Warnings, our strongest warnings, to the drug labeling of prescription opioid pain and prescription opioid cough medicines, and benzodiazepines. See the Drug Safety Communication, available at: http://www.fda.gov/Drugs/DrugSafety/ucm518473.htm, for a listing of all approved prescription opioid pain and cough medicines, and benzodiazepines and other CNS depressants.
FDA conducted and reviewed several studies showing that serious risks are associated with the combined use of opioids and benzodiazepines, other drugs that depress the CNS, or alcohol (see the FDA Drug Safety Communication, available at: http://www.fda.gov/Drugs/DrugSafety/ucm518473.htm,
for a Data Summary). Based on these data, FDA is requiring several changes to reflect these risks in the opioid and benzodiazepine labeling, and new or revised patient Medication Guides. These changes include the new Boxed Warnings and revisions to the Warnings and Precautions, Drug Interactions, and Patient Counseling Information sections of the labeling.
FDA is continuing to evaluate the evidence regarding combined use of benzodiazepines or other CNS depressants with medication-assisted therapy (MAT) drugs used to treat opioid addiction and dependence. FDA is also evaluating whether labeling changes are needed for other CNS depressants, and will update the public when more information is available.
BACKGROUND: Opioids are powerful prescription medicines that can help manage pain when other treatments and medicines cannot be taken or are not able to provide enough pain relief. Benzodiazepines are a class of medicines that are widely used to treat conditions including anxiety, insomnia, and seizures.
RECOMMENDATION: Health care professionals should limit prescribing opioid pain medicines with benzodiazepines or other CNS depressants only to patients for whom alternative treatment options are inadequate. If these medicines are prescribed together, limit the dosages and duration of each drug to the minimum possible while achieving the desired clinical effect. Warn patients and caregivers about the risks of slowed or difficult breathing and/or sedation, and the associated signs and symptoms. Avoid prescribing prescription opioid cough medicines for patients taking benzodiazepines or other CNS depressants, including alcohol.
Patients taking opioids with benzodiazepines, other CNS depressant medicines, or alcohol, and caregivers of these patients, should seek medical attention immediately if they or someone they are caring for experiences symptoms of unusual dizziness or lightheadedness, extreme sleepiness, slowed or difficult breathing, or unresponsiveness.
For more information visit the FDA website at: http://www.fda.gov/Safety/MedWatch/SafetyInformation and http://www.fda.gov/Drugs/DrugSafety.
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