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?"
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.
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.
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.
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!
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.
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
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.
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.