Saturday, July 9, 2011

Ethics and The End

Late afternoon Thursday, we finally got all the ducks in a row to start hospice care for my Mom. The final step was the signed order from the doctor being placed in my eager hands... or so I thought. Then he wanted to chat.

In a way, I think he was trying to prepare me for these final days but I kind of have mixed feelings about some of what he had to say. He talked about the goal of hospice is to provide comfort rather to solve a medical issue. And here's where our disconnect began... apparently rather than dress wounds and give antibiotics the answer is now to provide pain medication. Lots of it. More than is probably needed to simply address the pain because a slight overdose of pain medication makes a person more sleepy and less hungry and thirsty. With less intake of food and water, less nutrition, the vital organs shut down faster and they die sooner. He said, in simplest of terms, that the goal now becomes to medicate her to death.

He did acknowledge that medical ethicists have issues with this kind of care... that it's kind of a gray area of medicine. At the same time he affirmed repeatedly that the goal is to die faster and in comfort. He also said this gray area is what drew many doctors, including him, to a practice in geriatrics.

And when the hospice nurse came to do the intake assessment, the first thing she did was order what they call an E-pack. It has 4 vials of liquid medication to be dispensed as drops under the tongue. The first one she talked about was morphine. (And yes, I'm a little freaked to have a vial of morphine in my house!)

When a person is in pain, I'm all for giving an appropriate dose of pain medication to bring relief and comfort. Where I have problems with this approach is in purposely giving just a little to much with the intended purpose of hastening death.

How is this not murder? Where do the ethics really lie here? Am I crazy to question it rather than trusting what the doctor says?

If I were to give an honest assessment of what's really wrong I have to admit my Mom has a lot of problems. Historically she has had a major heart attack, bowel cancer, gall bladder problems, 2 broken hips, osteoporosis, and advanced dementia. In recent months she's had less and less interest in eating and has lost a lot of weight. With the nutritional deficiencies she's got contracture in both knees and edema in both lower legs. And she's got some awful bed sores. However, she will eat and drink and is alert much of the day. Well, not so much today after the hospice nurse ordered her to bed yesterday. The bed sores I've been able to care for are healing. The pain she expresses seems to come and go quickly is appears fairly well controlled with the occasional ibuprofen. And surprisingly, considering all this talk of offing her quickly, the lab results for the blood draw at the doctor's office is very very normal and healthy.

I am so unsure of what I think and feel right now.

7 comments:

Tami Nelson said...

Kathy you do what you feel is right for your mother. If the tables were turned I'm sure she would not want to hasten your death! If you feel uncomfortable with the overdosing then you need to voice that concern to the hospice doctor. Meds to control the pain so she's not suffering I can see....meds to hasten her death....its legalized murder!

My 1st husbands uncle passed away about 2 months ago. His doctor told my aunt just stop feeding him he will starve to death and then pass....yeah she had problems with that and kept feeding him what he could keep down . In the end he passed about 2 months after she was told that.

If you don't feel ok with over-medicating your mother....don't allow it! God will answer your prayers and when it is her time to go she will. In the meantime....pray to understand, cherish and to learn from this experience...and if you need anything at all please call me! Hugs

Tami

Lisa said...

Kathy, I have no idea what to say to this gray area... What I can do is tell you a story.
I had a wonderful friend, Rose. Her daughter and Jessica have been bff's since 2nd grade. Rose was suddenly diagnosed with Lou Gahreg's. From start to finish was less than a year.
But at the end, she just really went down hill fast. When Hospice came in, it was such a blessing. I'm sure that they took the same approach with her. I remember daughter in law, who moved in to help, telling me that the night before she passed the doc had them give her a medication that would "help her to let go", something that would relax her enough so she wouldn't fight it. The end was eminent. her health was bad, but most importantly her "quality of life" had been compromised. While she was still healthy and strong she told us all, that she didn't want this to drag out. She didn't want to be a walking corpse... not able to communicate, think straight, or be comfortable.Rose passed away in the early morning after she was given the medication, peacefully and surrounded by loved ones.
No one can give you the answers, only Heavenly Father. The Spirit will comfort you and help you to know the way to go with this. I just love you Kathy and pray that my daughters take as good care of me as you are for your mom! Lisa

latter-daymom said...

Kathy, I agree with both comments before me. When my mother was in the hospital before she died, we had to make the decision to let her die or keep her on some kind of 'life support,' which was totally against her Living Will. I felt then (2 1/2 yrs. ago) and still do somewhat that we told them to 'kill' her. I do realize that she would not have wanted to live that way and would want to die with dignity and not from something long and drawn out where she suffered and required alot of care. I am sure your mother would want that too. No one wants to be 'taken care of' and lose their dignity.
Heavenly Father loves you and Aunt Jessie and He will help you get through this ordeal. You have taken such good care of your mother.
I will remember you in my thoughts and prayers. Could you ask your Home Teacher or Bishop for a blessing to help you with these decisions?
I love you,
Jeanne

Kathy Burton said...

Thank you for sharing your thoughts and support... I'm still conflicted about what to do because we aren't yet to the point of letting nature take over. If you know much about me you know that for however much tears flow freely and like a great river, I am pretty well grounded in reality. What has me so unsteady is being asked to premeditate a death... being asked to take it out of God's hands and actually cause a death to happen. Are we to the point as a society where the aged and unwell are to be discarded for the sake of convenience?

Kathy Burton said...

Terri Sirine via facebook:

Hey Kathy, Just wanted to send you a note after reading your blog. You and I are both in similar circumstances with our moms. I want you to know that not all hospice companies are created equal, I don't know which one you talked with but a few months ago the dr. I was taking my mom to said she should go on hospice and recommended a company that he used, said it would be good because he could go to the assisted living facility and see her, she would be able to get help 24/7 and meds could be adjusted etc. Well the company was Invision ( not sure about the spelling) and they came and had her so medicated that they definately were on the path to death, I was livid! I fired them within 3 days, I went back to the home health company which I should have used in the first place, I just didn't because the dr. wasn't on their list and anyway, the company is Mill Creek and what a difference they are compared to the other company! They come whenever called, very compassionate, they start with low doses of meds and work up to higher doses trying many different things to help find relief, they have a massage therapist that comes in to rub my moms swollen legs and feet, people who come to just talk with her and sit with her. The nurse has spent countless hours just talking to my mom and trying to console and comfort her. She has brought in other nurses and healthcare people with more experience to try and get the best answers and information. All have been so wonderful and not at all like their main goal has been to end my mom's life. This has been a hard thing and as you know good medical care is of the utmost importance, I don't want my mom to suffer and she has for a long time and not had much quality of life. I know that the assisted living place where she is the people there have said with Mill Creek they have had people on hospice 3 or 4 years where the other company was bent on no that is really rare and this IS end of life care. My mom is 88 1/2 years old, I know it is end of life but having the people who sincerely care make all the difference and I feel like they have truly tried all options before last resort things. Last night a pain pump was put on my mom, her body is not absorbing medications and she is in pain, even with the pump today she was still struggling, I am not sure about what will happen over the next few days, but I do know that all was done for her best interest and every ounce of compassion from everyone has been given. I know ultimately God is in charge and I rely on Him heavily. I pray you will get the answers you are looking for and need, and that all will work out well. Take care, if you have any questions I am here and would be more than happy to answer anything I can. God Bless! Terri

Evelyn said...

It is my feeling that you should trust your feelings, and do what is right for you and your mother. The hospice people work for you, and if they don't want to help in a way that makes you comfortable, then find one who will. It is about helping you. I hope you know that you have our love and support no matter what!

Love,

Evelyn

Kelly Paul said...

Kathy,

Don't do anything that violates your beliefs - whatever they may be in relation to this situation. It is so easy to allow oneself to compromise when tired, scared, concerned and generally stressed and worn out.

If you believe it is wrong, strongly tell the physician you believe that and that the physician will have to work within your requirements. If the physician can't do that - seek one that will.

I know this is a difficult time, and I know you are a strong woman. Take a breath, meditate, pray - everything you need to do to get back to center - make a decision, stand tall and move forward knowing you are doing what is right for you and your mother.

Kelly