My father's healthcare conversation

My father lived to a few days short of his 94th birthday. When he was 92  the nursing home sent him to the hospital because he coughed up blood. They called me; I rushed to the facility, and got there after he had been given a chest x-ray, an electro-cardiogram and no clear diagnosis. The doctor was about to put a tube down his throat to determine where he was bleeding. My father had a living will, a "Do not resuscitate" order and I knew he did not want the procedure. I had a long, terrible conversation with the doctor: What would he do if he found the source of the bleeding? We would not permit surgery. He said Daddy might bleed to death. I asked if it would hurt. On being told no, I was forced to tell him to let my father die. My father was grateful, but the conversation devastated me. Equally awful was the conversation I had with the nursing home.

My father was going blind from macular degeneration and becoming increasingly deaf. I'm know he found no good way to cope with this and wanted to die. I'm sure he died when his life became unbearable. I am pleased I was able to keep him from one more pointless indignity and a bad sore throat. 

My mother lived to 89. She was completely demented; did not know who my father was, or who I was; saw visions and finally spent most of her last days unconscious. My father took care of her until four days before her death, when unconscious and incontinent I insisted she be taken to a nursing home. After two days the doctor called me and asked if he could take her to the hospital. I said no. He then called my brother, who had  little to do with my mother's care, who said yes. For the next two days my comatose mother was enthroned on a kind of pedestal bed with multiple tubes from her body to multiple machines. Then she died. Those two days cost Medicare $10,000 in 1995. Assuming those multiple machines could have saved her, what would be the point? So more money could be spent on maintaining a completely meaningless life?

I think there should be universal healthcare. I think there should be single payer universal healthcare, although I don't believe it will happen in my lifetime. I don't believe the government wants to kill me or keep me from living the fullest possible life. I would like the government and the healthcare system to allow me to die when my time has come.

For a great discussion of the economics of healthcare listen to this program from the Brian Lehrer show on WNYC. Brian Lehrer has many great discussions about healthcare and other matters of pressing interest.

 

Comments

[MissDazey]

I appreciate your blog as it points out what too many people have to go through.

I found you via Time Goes By.

[lilalia]

Thank you for the blog post. I don't know if universal medical systems would improve such problems as you faced, for it really does depend on the quality and humanity of the doctors and health officials you are dealing with. Yet, at least in the countries I know of in Europe, the hospice and home services are very prevalent. Perhaps in your system it is less so. Like you, I agree that the health care system has to respect the wishes of the patients about how they wish to die.

[Alexandra]

Thank you for sharing this experience with your parents. I was fortunate mine did not require similar measures. We learned about the DO NOT RESUSCITATE form when my 96-year-old mom was transported to the hospital in an ambulance for pain. I filled it out immediately. I cared for her for over 10 years and her doctor had not thought to mention a DNR. At the hospital, we were told she could go to a nursing home, after three-days, paid by Medicare. We took her home instead where she had hospice for 7 months. People do not know about hospice, either. I hope there is more discussion of these important end of life decisions, and you are doing a great job of stimulating such discussion.

[Mage Bailey]

Oh yes, I so agree. I do wish we had a universal health care here. We all have DNR's, and our friend Duck had one. Medical care to pay the bills, and the ability to die with dignity. Thank you.

I wish I could have written about this topic as clearly as you. I just ended up a fuzzy mess. Oh well.

[Darlene]

Thank you for telling your painful story. I have one that I will publish on my next post on health care reform.

It is maddening that the naysayers are distorting the provision that was in the current bill and was removed after the misrepresentation of the provision. I am referring to the provision that would have paid for an 'end of life' consultation with your doctor. The one that Sarah Palin falsely referred to as Obama's death squad.

I have a living will and a medical power of attorney. Everyone should have one to prevent the horror you had to endure with your mother's treatment.

[Alice]

A very thoughtful post, and you're very strong to have been able to do what you did. Too bad your brother didn't measure up nearly so well. (Who says woman is the weaker sex?!) Thanks for the tip to Brian Lehrer. He's quite an impressive communicator! We just came from a health rally; we went to challenge our (Democratic) representative Jim Matheson face to face and it was absolutely useless as he's got his hand in the pie of insurance companies here, and we'll try one more time by a group of us confronting him at a posh dinner meeting he has scheduled near our Millcreek area. (Just hope he doesn't get word beforehand and cancel it because that's the lilly-livered kind of politician he is. He's only there because he was the only Democrat we had to vote for!) Utah is by and large very friendly to the big business communities, too, and insurance is a biggggg part of that. I get discouraged but glad to see there are others out there trying to fight the good fight. Sometimes my country make me ashamed, but certainly not you and the readers who commented. Bravo!

[Cynthia Friedlob]

I also blogged in support of Ronni Bennett's "Day." Thanks for sharing your personal story and your straightforward comments. I'd just like to add a couple of links for your readers so that they can find out (if they don't already know) who represents them in Congress, then call or e-mail asking for substantial changes in our health care system. I agree that it's unlikely we'll see a single payer system any time soon, but we must demand action on the part of our elected representatives. Thanks and here are the full links (HTML isn't working for some reason):

The House:
https://writerep.house.gov/writerep/welcome.shtml

The Senate:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

[Stacie]

Great post as usual. My story is with my grandmother. She had a bilateral stroke when she was 72 years old. The only thing she could move were her eyes. She could blink. The Doctor would not put a feeding tube in after a week, saying she would not last another 24 hours. My father and I asked her if she was ready to die, 1 blink Yes, 2 blinks No. She very clearly blinked twice, and we fired her Doctor and got a feeding tube put in. After some rehab, she lived another 8 years, very fulfilled and able to eventually feed herself. She spent most of her days reading books, and being doted upon by her family. The Doctor gave up on her too early. He never thought to ask her what she wanted. Had we left it up to him, she would have died of starvation. My gut tells me he I don't think there is a one size fits all solution to our health care crisis. How does one know when to "pull the plug" so to speak? I believe the answer is with each individual, each family. Good discussion to have, non the less...our culture needs to come to terms with the fact that we all die.

[Dissertation Editing]

Blogs are so informative where we get lots of information on any topic. Nice job keep it up!!