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We live in CA where there is no Physician-assisted suicide (as in Oregon & Vermont). Dad has a DNR. He told the Facility [where he lives] that he does not want CPR or to go to the ER ever again. The Home claims that the Paramedics (NOT Dad!) decide if he must go to the ER. Is this true?
Dad is taking 15 powerful drugs whose side effects include headaches, dry mouth, heartburn, nausea, blurred vision. Dad has all of these side effects & he is miserable. They give him Tylenol for the headaches & Prilosec for the GERD, neither of which would be necessary if he wasn't taking these 15 drugs! He said that he has lived a good life and now wishes to die. He is incontinent, cannot walk and cannot feed himself. I feel helpless watching my poor Dad SLOWLY fading away painfully with no quality of life. Meanwhile, his meager savings are being drained by his pharmacies, drug companies, medical supply companies (aka, the Medical Industry). This is not right...or humane.
I was shocked to hear that none of Dad's medications have been tested on older people! In my opinion, the drug companies are using fragile seniors as their alpha testers. In other words, Dad has become a little white lab mouse for the drug companies. Is this why the Medical Industry wants to keep seniors alive beyond their natural years?
Dad is on Kaiser, which is a great Plan for young people because it focuses on preventive care. But Kaiser admits that gerentology is not one of their strengths. Doctors are trained to CURE people; my Dad cannot be cured. So Kaiser put him in HOSPICE. When he did not die in 6 mns, he was removed from the program. I am ashamed of my country's unwillingness to deal honestly with the issue of dignity and a Good Death for a generation of people who built our powerful middleclass with their strong work ethic. These people fought in two wars for their country and only ask for decent care and attention to their end-of-life wishes. Can we talk about these issues?
I am Dad's trustee, Power-of-Attorney, his trusted advisor, and his loving daughter. But I am 73 years old with medical issues of my own. This is a case of the Old-Caring-for-the-Old, which seems to be the standard side effect of the current research to keep humans alive indefinitely. Seems that no one wants to ask the hard questions: "What is the purpose of keeping people alive beyond their natural life?" "What will happen when 120 year old seniors run out of money?" "Is this tinkering with the natural cycle of Life & Death even ethical?"

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You let him know. It's not his time. Remind him..... What about you. And what would mom think.
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I hope you received resolution to this. I just watched my Mom suffer uneedlessly and much of what happened was because of the medical system. As an RN I can say it's no longer driven by patients, but treated as a business largely. I'm not saying EVERYTHING is, I'm saying much is. Mom was only 79, and it took me going over the heads of the people who said what she needed to get what she needed and then it was too late.
She wanted to live longer. She died as we watched. This is the first time I've been able to post since her death. My wish for your father is that he could go into Hospicecare, where he would receive palliative treatment only, and be able to go on his own terms. EVEN if this meant coming into your home, and having nursing care for him come in. HOWEVER our govt. isn't set up to do things this way, that would be cost effective.

I couldn't read through all of these because of my grief, but I wish you well in respecting your Dad's wishes. He should not be forced to have medications, or food to keep him alive. God will take him in his own time. Get a new Dr./geritologist who is caring, or email me and I'll try to be an advocate, even though I cannot work b/c of my back any longer. I can make phone calls on your behalf.
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Does your father have a durable power of attorney for health care? Why are they tube feeding him? If he has clearly stated that he does not want to prolong life they should not be force feeding him. In the hospice house that I worked at patients were never restrained, I believe there are laws concerning restraints and it sounds like they are breaking them. It seems like your Dad is trying to leave this world and they are forcing him to stay even forcing him to have IV's. I would be calling the Ombudsman in your area and asking them to look into this. Poor guy this sounds completely inhumane
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Ask the facility to put mittens on your father with a rolled up wash cloth in his palm to make a fist or get squishy balls he can squeeze. Use these instead of wrist restraints and he should not be able to pull out the IV if it is properly restrained with the tubing out of reach. Also ask how often they are providing complete passive range of motion for his extremities. They should be removing the restraints at least every four hours and exercise his arms from the shoulder down to the finger tips for his continued flexibility. When you are visiting you can do the same thing. Remove the restraints one at a time and exercise his arms. Why does he have an IV if he is getting nutrition through the nose? He may try to pull that tube as well. You need to talk to his MD and see if providing tube feedings are really following your father's DNR wishes.
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To reply to the answers above my father is still in restraints although he has no trache, no vent, he does have a little oxygen & nutrition through the nose. Every shift change I call & ask the nurse to please do alot of range of motion on his arms every time she changes his position which is every 2 hours. They always say yes they will but they must not be doing it because tonight's nurse now says one hand is very swollen so they loosened the restraints rather than removing them. He is round the clock laying on his back with the arms laid level with his back with the wrists strapped to the guardrails. No bending at the elbow. So of course one hand will be ruined permanently now. No what they say is one day he tried to pull out the IV. But they are not restraining him some, with hands moved or free some, they are strapped straight out 24-7 so if he ever heals he will not be able to move his extremities as in being able to feed himself. And as I say there is already signs of permanent damage to one hand & still strapped down. Now of course this would happen on a Saturday when no one will work that gives a crap until Monday. Which means probably permanent damage. And still no relief for him. I just do not understand.
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One very important thing you need to do is give your dad permission to go and be with your Mom
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I think you should request he be switched to comfort care. That's what they do for hospice patents. His basic needs will be met and his meds will be reduced to just ones that keep him from suffering.
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DeeCent, Yes I understand his wishes to go. Have a talk with his MD about stopping all medications except comfort care. If he needs morphine, get some ordered for him. Fifteen medications would be bad even if you were young and healthy.
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Your Dad has the every right to have a DNR and his care facility doesn't have the right to contest it. Absolutely, post it on his bed, first responders are trained to honor people's choices. He also could stop all of his medication, this doesn't guarantee they he will die faster but if he wants to go why take anything. You can talk to his MD about just providing comfort care. He probably was disenrolled from hospice because he didn't fit the Medicare criteria, which can be frustrating. I know this because I worked as a Hospice Social Worker for years and we were often frustrated with the restrictions. Most hospices have a palative care program too, you might want to ask your local hospice if they will enroll him in that program, then as soon as his status changes they will get him back into hospice. I feel so sorry for people like your Dad and possibly us someday that are told they have no rights. You are such a good daughter to try to honor your Dad's self determination. Keep fighting for him!
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Kathleen,
For what it's worth, I have seen similar stories from other states, so it may not just be a Texas problem. So there may be resources to consult outside Texas.
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Dear Kathleen
I wish I had words of comfort and wisdom for you. Your story is horrendous and on the face of it should not have happened but without access to his records no one can make a determination of what went wrong.
You have the right to request a copy of his records and with that in hand consult a malpractice lawyer if you wish. Were the restraints used because he was pulling his trach or IVs out? Do you have any friends who are in the medical profession who can help you understand and make the best decisions for your father. If there is a hospital DNR in place you should have the right to stop all artificial nutrition. I don't know the laws in Texas so can't advise. All I can do is offer comfort and support as I am sure many others will do
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After watching my mother die after a year & a half on 24-7 oxygen through a trache & feeding only by Gtube, not able to speak cause of the trache, not able to eat or drink by mouth cause of the trache I have tried to get my father on hospice for 3 months now. No one would write the 6 months of less order that would have kept him out of hospital at his nursing home. Cause he went to the ER 2 weeks ago & was given too many antibiotics he got C Diff which caused a toxic mega colon meaning he had to have his colon removed. this mean't gen. anesthesia which includes a ventilator. They left internal bleeding which wouldn't heal so they left the gut open (unstitched) leaving him on the vent until whenever they felt like stitching him up even though he could breathe fine through his mouth. Because he was on a vent they strapped his wrists to the guard rail constantly leaving him now unable to bend his arms. Once they stitched him up they extubated. He breathed room air through his mouth just fine for 2 full days. Then next day they said he had fluid in his chest and would need the vent again or die. I said no. I said use a mask with oxygen if you need to. At least he can still talk. This is all from an 85 with mod to severe alzheimer's that was eating all solid foods in the dining room. Walking around fine. Toileting himself fine. Now he will be bedbound for life after 2 weeks on the icu table. His kidneys have been destroyed by the antibiotics. He will be pooping into a colostomy bag strapped to his waist now since he has no colon. He was breathing fine thru his mouth til the ER & now he is continuously on 100 percent oxygen through a something pap mask.

Since he has no colon they still won't feed him. He is only getting iv fluids & nutrition which bypasses the digestive tract. This morning they turned that off because with his kidneys not letting him excrete everything his blood test said that his fluids & nutrition were backing up so they now are giving no fluids whatsoever & diuretics. With the 100 percent oxygen blowing on his mouth his tung & lips are so dry they hurt. And his arms are strapped down straight so if an arm fell asleep during the 2 hours between position changes he would be in pain. If they give pain meds the blood pressure tanks.

All of this is happening to him because over the past 3 months no one would write an order of 6 months or less and get him on hospice which would have avoided the hospital visit at all which would have avoided the 3 antibitoics which would have avoided the destroyed kidneys & colon which would have avoided have to starve & dehydrate him and blow air on parched lips.

2 weeks ago he was walking, talking, eating normally. He had a 13 WBC & 94 over something blood pressure so nursing home sends him to ER without calling me the POA. I found out a 2am he has been given the meds that have killed his kidneys, colon, lungs & everything else. I should have been called. I would have said don't send him out. Call doctor in tomorrow. I accept full responsibility.

Anyway, now he is being tortured & I can't do anything about it with my POA. They are not observing his Living Will. They are not observing POA orders. This is in Dallas, Texas in a major hospital. It has to be illegal. It either has to be illegal to send a patient to the ER without a call to the POA or it has to be illegal not to observe a living will. That is all I can say. But without a relative as a lawyer. They get to torture the elderly & get paid highly to do so.
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A doctor of mine told me about Pallative care, in which they remove you from all drugs and let you pass away naturally. She said more doctors were telling people about Pallative care because they felt the same way that we all do....LIVING TO BE EVEN 80 OR 90 WITH NO QUALITY OF LIFE IS NOT LIVING FOR THE PATIENT OR THE FAMILY.

When my father was ill and hospitalized for the last time, he told us that he wanted to speak to his doctor and he was kind of agitated but he said to us all, "this is it, I do not want to go through this anymore." He was motioning to me that he wanted a shot to put him out of his misery. All I could do was cry but I understood why, he was mentally, physically and emotionally drained and had emphysema. He was put on morphine and died several days later.

I know many religions do not believe in helping someone to die as it is considered suicide but I feel like it is being merciful to individuals who have been through the wringer and are ready to go. I personally want that choice for myself and if I cannot mentally make that choice then I want my daughter to...I do not want to be a burden on anyone.

All my mother wants and has wanted since my father died in 2006 is to join him and her family. I never thought she would live this long after my father's demise and now with her dementia, she has begun looking for him in the house to tell him dinner is ready!
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At the age of 84,my Dad made it very clear to all of our family that his time had come to die, and he needed to be allowed to die. His mind was clear and he was intelligent but was terminally ill. He also had a medical directive that our family ignored ( with the exception of me). He was in constant pain or discomfort, and his dignity had been taken from him due to his medical needs. When he died, my husband and I were the only people with him because no one wanted to believe he was truly dying. I think people have to let go of those who are elderly, ill, and have the wisdom to realize they are ready to die. Our elders are much wiser than many medical people want to believe. You and you father will be in my prayers. I can tell you that I cried as Dad slipped away but was grateful he was no longer in pain.
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I see two questions here:

1. How do you make sure his desire not to go to a hospital is fulfilled.

The nursing home probably has a policy that requires them to call the paramedics for anything that seems serious. You have to ask them how to deal with that. If the paramedics ARE called, they are required in most (all?) states to resuscitate and transport to a hospital unless the person has an out of hospital DNR. So he's got two strikes against him: NH policy and EMS regulations.

In Texas, there's a special form you fill out and have signed by your personal physician that allows them to leave you at home. Someone actually had to be willing and able to give that paperwork to the EMS, which might be troublesome at a NH.

You need to ask someone with legal expertise in your state. Possibly your dad's doctor will know. Or the hospice he used to be in. A hospice would know for sure how to deal with it.

2. He's taking Meds with side effects he doesn't like.

Has he talked to his doctor about discontinuing some of the Meds? In hospice they don't TREAT illnesses, they minimize suffering from them. It sounds like that's what he wants. If it is, talk to his doctor about it.
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Thank you for opening this discussion, I do not this pharma is using he elderly as lab rats, since ony closely controlled i
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My dad lives with me he's on hospice also. He takes celexa for depression my mom died last year . He didnt want to live also but after staring this med he's so much better. The hospice nurse got him steroid pills for energy and a sleeping pill at night. He also has to take prolosic for stomach. My Dads 89 he walk 15ft and hes out of breath so he uses oxygen when needed. His body is wore out but his mind is great.
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I think you might find a hospice program that will help your family. If there is a good hospice home available that might be ideal. My Dad was in one and they do adminster whatever meds or treatments make whatever life they have left as pleasant and pain free as possible. Most people wait way too long before making the move.
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Try a different hospice program if possible. The point of hospice IS palliative care - no hospital visits - and a good program would evaluate all meds and discontinue any that were not needed for palliative care.
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I thought it was the patient's decision. I know that when my MIL fell I called 911 and they said they could not force her to go anywhere, that that would be considered kidnapping. This is in Alabama. If the meds are making him miserable have them evaluated. I think doctors are too pill happy. Most of them are anyway. My mom went to one who, along with 3 nurses, just could not believe that a woman in her 50's was not on any kind of medication whatsoever. She's 65 now and still doesn't take anything. She still works fulltime and is in good health. Other than arthritis she doesn't have any complaints. She just uses aspercream or takes aspirin. My MIL is on 10 different prescriptions now and has been for some time. She has mild/moderate Alzheimer's and various other health problems. I'm not blaming the medicine but I don't know that the meds, other than maybe the Alzheimer meds and blood thinner, are improving her quality of life.
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Dear DeeCent,
In answer to your first question, the Paramedics do not decide, if you have all the necessary paperwork in place stating that your Dad has a DNR in place. It should be posted by his bed. Does he have a medical directive in place? Can you get the doctor to sign off on a POLST form, which very specifically states what should be done in case of an emergency? Most doctor's offices have them. I don't understand why he was taken off hospice. It's an evaluation every 6 months, but if his condition has not improved, he can stay on hospice. It sounds like you are getting some wrong information. Is your father's lung cancer still considered terminal or has his condition changed? Do you have Power of Attorney? If so, you can consult with his doctors. Unfortunately the medical system is not always in alignment with the patient's wishes, but it's important to remember that your Dad has free will. I'm not saying he should stop taking his medications, but it sounds like he needs someone to be a strong advocate for him and get some straight answers from his doctors. Best of luck. I'm happy to continue this conversation with you.
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In CA you can get a POLST signed by your physician. http://www.capolst.org/ It helps the patient to make end of life decisions. I have one for my mom in CA. I have not had to use it and she lives with me so we will see what happens when the time comes. This should be able to help your father to have his wishes carried out. I agree with the above statements to review his meds and try to consult with a gerontologist/geriatrician to minimize his meds and make him more comfortable.
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I know what you are going through. My dad's last month was terrible. My mom passed 4 years earlier. She was 74 and he was almost 91. To see what I remember as a strong husky man go down hill like that was unbearable to see. It is hard to get that vision out of your mind.. He didn't deserve to end that way. He should have gone quietly in his sleep. He always said, I fought in 2 wars and I deserve a peaceful death. My heart goes out to those of you going through this.
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I'll tell you what my dad did at 91 when he was diagnosed with lung cancer and given 12 months to live. He stopped all of his medications. He wasn't on 15, but even without those meds, he lived 12 months and 3 days. If I was you, I'd get the 15 meds reviewed by a trained geriatric pharmacist. You might be able to drop half of his meds and at least make him more comfortable. You can find one here: http://www.ccgp.org/locate-a-CGP And they can do a review if you send them a list of your dad's meds, i.e. you don't have to physically be in the same place.

For example, my dad AND mom were on Lipitor for cholesterol. I think docs prescribe those like candy. When you hit 60, you get Lipitor. I'm pretty convinced it helped my mom's loss of short-term memory. By the time you reach your 90s, my attitude is screw cholesterol! So I took my mom off of hers years ago and she's heading towards 94 and still in independent living (with a LOT of help from me). And my dad stopped his and his other meds and still lived comfortably for a year with his terminal lung cancer.

And my dad refused to go to the ER one time when he fell, so at least here in Illinois, the patient determines whether to go to the ER or not. If you have POA, I'd get a bit feistier with the facility where your dad lives about honoring his wishes. Is your dad in California? My brother and his wife (in CA) have Kaiser, that's why I ask. I'd be surprised if CA doesn't honor patient wishes.

I agree with what you say about our seniors living too long with poor quality of life. My mom says it all of the time. She's ready to go, but still has a relatively healthy body for her years.
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Deecent, I am caring for my 90 year old father and he is made helpless from a massive stroke. Very hard to deal with. They have him on his bloodpressure meds, aspirin, and something for gerd. They changed the blood thinners for an aspirin. You said he was on hospice once before and outlived it, { we had the same thing happen) after a few months, I asked to see if he re would requalify for hospice again, and he did, you may try that. They are about comfort and not cure. You might want to see about getting him moved if they do not carry out HIS wishes and see about talking to his doctor , and see if he re qualifies.
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I too think it's horrible to sit and watch a parent fail. im in poor health myself .. it really sucks! I'm sorry for u and like kj said I do feel your pain....
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I don't have an answer for you, but I have the same feelings and questions as you do. I'm going through a similar situation with my almost 91 year old mom, and it's a terrible thing to watch your loved one go through. Just know there are many of us out here who feel your pain, and I don't know what the answer is. Good luck to you and your family.
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