Sister is dying

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

My sis is 44 and was diagnosed in 2006 (February) as having stage IV colon cancer. They told us that she had thousands of tumours in her abdomen, that it spread all over the ovaries and just about everywhere. She was told that chemo would not help and to gather the family - that she had three months tops to live.

She insisted on chemo and was doing very poorly, but lo and behold, sometime around August 2006 she went into remission. We asked her to settle her scores, make a will, funeral arrangements etc., and then travel and do all the things she always wanted to do. Alas, she did none of the above and insisted she was cured.

Sis had a colostomy last year (Feb. 06) and hated it from day one! She whined and complained about this bag for an entire year, and said she would never travel with it. She had other issues with her health off and on, but the bag became her obsession. As soon as she was strong enough this past spring, she started asking doctors about reversing the colon so she could have normal BMs. We advised her not to mess with a good thing (though it's not the ultimate), but she went ahead anyway. There were complications and problems for two weeks after the surgery, but she came out of everything more or less. After that there were periods of great discomfort but she did sort of okay.

This past July 14th she was readmitted with an intestional blockage. She had tried enemas and laxatives to no avail. Problem was, the tumours had returned in the colon and near her ovaries. Very big tumours that makes it impossible for them to once again, reverse the surgery and put the same bag she hated. She told us that once they do this, she will never complain again.

It's now too late Crying or Very sad

The hospital called today and said gather the family. They want to take her off her drips (nutrition and fluids) and only leave pain meds.

My mum does not want her to starve to death. Can the hospital do this without our consent? I have no where to turn because no one else I know ever went through this. I told them that I couldn't make a decision without her husband, but he's in Europe and we can't find him! He is not from the US. She lived in Europe for 25+ years so that's where "home" is for her, but she's been in the US for 2 years now battling with cancer.

Can her husband sue us if we make any decisions without his consent? We were told by the hospital that since we can't reach him, her next of kin decides whether to have any life support or not.

brainman · Posted: Sat Aug 04, 2007 1:16 am Post subject: Re: Sister is dying

Honeysuckle, I am so terribly sorry about your sister's cancer and her deteriorating condition. It places you and your parents in a very difficult ethical and possibly legal quagmire.

Can the hospital take your sister off of nutrition and fluids with out your consent? Only if one of the two following things apply:

1. She has left instructions that she does not want her life to be maintained by artificial methods (usually in the form of a Living Will or Durable Power of Attorney) or

2. The doctors declare her to be brain dead (official definition of death). Most states (if not all states) require two independent doctors to sign the declaration of brain death.

Can her husband sue your family? In the United States anyone can sue anybody else for anything. You probably speak with a lawyer about this issue. The lawyer will help you to establish that you made a "good faith effort" to contact your sister's husband to make this decision but were not able to locate him in a timely manor.

Having said all of the legal stuff, the issue you face still has an ethical component. What is the right thing to do for your sister? I know this is not easy. I was fortunate that both of my parents expressed their wishes while they still were able. Most hospitals in the USA have an Ethics Committee. Every ethics committee I have belonged to (belonged to 3 and chaired 1) had members from almost every medical discipline including nurses, doctors, hospital administrators, community at large members, and chaplains... all trained to review cases from an ethics perspective. Request a family consultation session with the Ethics Committee to review your sister's situation. They cannot tell the doctors or you what to do but the can offer very valuable advice.

I will be praying for you and your sister and your whole family.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

Thank you. Your post was very helpful. We will ask the hospital about the Ethics Committee session today. I am in Oklahoma. How can I find out what our laws are? We have limited income which makes things different for us Crying or Very sad

In this country, those with a lot of money and insurance have a much better chance of surviving for a longer time. It sucks if you have less. They immediately wanted to stop everything yesterday so she could go quicker which actually means, WE NEED THE BED FOR A BETTER PAYING PATIENT! And this is a Christian hospital Confused

I asked the hospital if my sister has a Living Will and they said no. She apparently "told them" (word of mouth) that she didn't want to put on a respirator and the doctor noted that on her chart. Surely that does not constitute a Living Will?

Going to the hospital shortly and will be back. I appreciate this forum. Didn't know where to turn to. We already lost one parent and my mother is now battling with breast cancer as well so this is a long, painful journey for me.

brainman · Posted: Sat Aug 04, 2007 12:10 pm Post subject: Re: Sister is dying

I am glad you will ask about the Ethics Committee and consult with them. One profession usually represented on the panel are the social workers. Besides an attorney, they can provide you with valuable information about what is and is not required in Oklahoma.

I have worked in 3 states and 5 hospitals and all had basically the same standards of care. While it may seem like the administration is pressuring the medical staff to get empty beds, I have never found that to actually be true. Remember that the only way for anything to happen is if your sister's doctors sign-off on it and most doctors do not actually work for the hospitals... they are independent to focus on what is best for their patients. I hope that brings some degree of comfort to you.

As for her verbal statement, in the three states where I have worked and I believe in most other states, courts will recognize those as "Living Wills." The problem for that hospital is that it sounds like your sister said nothing about artificial nutrition or hydration. Plus, it would take a very cruel hospital to go against a family's wishes in a situation like yours where there has not been clear communication about your sister's wishes. The hospital would prefer to err on the side of caution than risk a law suit by your family. Keep in mind that all I have said could change if the doctors say she is brain dead.

Your focus needs to be only the simple sounding question: "What is the best thing for my sister? What is the most loving thing I can do for her at this time?" I once worked in a hospital that was affiliated with a major medical school and had the blessing to attend their weekly ethics seminars. One of the senior medical students would present a real case and the group would discuss their options. Invariably, the ethics professor would have the last word. He would always say: "The ethical issue should not be solved by what the family or the hospital says. For a doctor, the ethical questions as ALWAYS: What is good medicine in this case? If you are practicing good medicine, it is always ethical." I have found that to be true. I translate that into my ethical mantra: "What is the most loving thing we can do for this patient?" Sometimes that means letting go. Sometimes it means fighting the system.

God be with you and your sister and your family.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

Brainman, once again you have blown me away with your knowledge. Thank you so much. I feel better equipped to talk with the doctors and staff.

We had a great day today! I was half expecting sis to be dead this morning considering how grim the doctor sounded yesterday. She was alert, knew where she was, the room number, her nurse's name, and able to tell me how she was feeling. They have her on pain meds of course, but she was not zonked out like yesterday.

Of course I am not expecting this to continue, but it was a relief to find a "real" person speaking to me instead of a zombie like yesterday.

I broached the subject of what her wishes were in the event that she cannot state this herself, and she became agitated and said it was not necessary because she'll be out of the hospital in no time! This got me aggravated because the doctors and nurses are telling me one thing, and she is saying that her tumours will shrink and she will be back in remission. She even made funny faces, peace sign etc., so I could take goofy pics of her!

One thing I want to know is this....If the hospital has me as a "contact person" on their list, does this mean I am responsible in any way for whatever happens to her? The nurse mentioned that in the event that she dies, they will contact my mother first and then me to take care of funeral arrangements. I cannot afford to do this at the moment (have 2 kids and lots of bills). I am afraid to get stuck with a huge funeral bill. My mother also does not have the funds of anyone else's funeral and was told by my sister that we shouldn't worry, her husband will reimburse us once he gets the life insurance cashed Shocked

At the moment, my sis and her husband are sort of separated and he has bluntly refused to do anything for her or communicate further with us!

We made contact in Austria through their police and that is the message he sent back.

Sorry to burden you with my woes. I know you can't tell me what is the right thing to do, but the information you presented brings me some knowledge and comfort, and for that, I thank you kindly.

Honey.

brainman · Posted: Sat Aug 04, 2007 8:52 pm Post subject: Re: Sister is dying

Honey, I am glad that your sister was more alert today. I can understand her reluctance to talk about her wishes. Many people have a hard time talking about their deaths or anything related. However, it still leaves you in a difficult position. You can always reassure her that you hear that she is confident about going home, but then ask her about the future; what would her wishes be whenever the time comes that she is unable to answer for herself.

Unless you are named as your sister's health care surrogate (a legal term), simply being listed as a contact person does not place on you any other burdens. You WILL be who the hospital calls when a decision needs to be made but you are not expected to make it by yourself. You can always tell the hospital that the decision is your mother's to make but that you will call your mother and inform her. Again, it would be nice for your sister to officially name someone to be her health care surrogate. However, even if you are her health care surrogate, you do not assume any financial obligation to which you have not agreed. Upon the death of your sister, her financial responsibilities will be transfered to her estate. Since she is still married, most if not all of her financial obligations will go to her husband. If your sister does not have a will, all of this will have to go through the court system. It can become a real mess.

I continue to encourage you to seek advice from an attorney. All I can share is non-legal information based on my experiences.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

Hi again Brainman.

My sister was doing quite well this morning, but by the afternoon she started to run a temperature. The nurse called the doctor to find out what they should do, and he said she was fine i.e. don't do anything.

I can't understand why they did not take some blood or try to determine what was causing the temperature. Will have to find out how high it was. Her urine was very dark yesterday and still was today...makes me wonder if her kidneys are acting up.

My impression is that the doctors believe she is a lost cause and do not want to take any major steps to help her. Should we ask to see the results of her last CT scan? One doctor told me that the tumour in her colon is what caused the blockage and the other big tumour on her ovaries. Another doctor mentioned to my other sister that there are numerous tumours in her small intestine. No one person is giving us the whole picture.. I realise this was the weekend, so maybe they're short staffed.

My mother has stage IV BC so my cup runneth over at the moment.

Appreciate all the help and advice you've given. It has meant a lot to me to come by here and read.

Honey

brainman · Posted: Mon Aug 06, 2007 7:29 am Post subject: Re: Sister is dying

Honey, I have seen all of my MRI scans. I see no reason why the doctors would refuse your request to see the CT report. However, it will be full of some very complicated language that might not be easy to understand. Rather than trying to interpret the CT scan reports yourself, I would opt for identifying the doctor I trusted the most and bring up these discrepancies with that doctor and ask for an explanation. It could be that all are true from different perspectives.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

Brainman, I had a good day today after meeting with my sister's oncologist. I really like this woman (met her when sis was first diagnosed), and like her blunt, honest manner.

She told me that the prognosis is NOT good, but she has seen patients who look like they're hovering over death's doorway, and suddenly they feel better. This does not give me false hope, but helped me to understand how some days sis is out of it while others she can sit up and laugh or enjoy company. The doc said that if my sis begins to feel better closer to her chemo date, and wants to continue chemo, she will allow it. Her focus is on giving the patient what they want, which also includes pain management. She will not stop the feeding or any IVs just yet, because she knows my sister's will to live and have a few more weeks is important. They also gave me a package from Hospice which I will read later.

Sis was really quite weak, and didn't care for light in her room. She wanted the room darker today. She knew we were there, but slept quite a bit.

I wasn't as sad or stressed today. I looked at this time in my sister's life as a blessing...she is surrounded by family and friends, and is getting help to probably finish her journey on earth. We will miss her, but she will be without pain. If she suddenly gets the strength to continue this battle, we will be there, but if she asks to be released from it (by voice, or her body's response), then we will let her go.

Her situation is awful. She has a complete blockage in the colon that cannot be operated on because she is so weak. The pain and gas really wore her out today. She was delirious at times, irritated other times, sleepy and disoriented at intervals. I tried to learn and appreciate in whatever way I could that I was witnessing the only good thing about cancer...that you get time to say goodbye even before you are really leaving, unlike my brother who was murdered and died alone.

Sorry for sounding morbid. These are my thoughts. They may change as I continue visiting her, but I felt it important to share them anyway. Cancer is horrible, and we will never know why she got this. She was otherwise healthy.

Thank you so much for your responses. I look forward to reading them.

Honey

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