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Palliative care, kill or cure?

Cgms310
Posts: 1
Joined: Aug 2012

I have a sad story to share with you from my family in England, but my concern is if the same practice may exist here in the US.

My sister in law had both breast removed some 10 years ago and was give the "all clear" until about 9 months ago, when her symptoms returned. Despite trips to Germany for supposed "wonder treatments" her health continued to fail and she returned home with my brother who despite his age, cared for her each day. Towards the end of May, 2012 my sister in law took a turn for the worse and was admitted to a local hospice only for the purposes of rest and additional care, that my brother simply could. After three days she was to return home.

He stayed at her side for the first two days, but had to go home briefly to get clothes etc, leaving his daughter to sit with her mother.

Within a hour of his departure, a team of three physicians entered and told the daughter that they were going to administer a stent for the purposes of feeding. Despite specific instructions not to do so, by both my sister in law and her husband, it was placed into her arm.

Within 36 hours her condition worsened to the point of her writhing in pain, only to have additional morphine administered.

When my brother returned to the room, he asked that the stent be removed immediately, but they refused, telling him it was for the better good of her health, needless to say, she was failing rapidly and she passed away on June 1st.
It was later discovered that she had be placed into a program called Liverpool Care Pathway (Google it!)

This procedure is used when a team of doctors "decide" that the patient in their opinion was not going to recover and simple cut off food and fluids. They continue to give pain medication until they die.

My brother is now seeking legal counsel as the what if anything he can do, but to be honest, the system in England is ancient and like Canada, is a disastrous failure of socialized medicine.

If you know of others who were killed in this way, or of similar incidents here in the US please let me know.

Thatnk you,

Charles.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I was asked by the counselor at my treatment center to complete a document asking about my wishes for my end of life care. It included questions like would I want hospice care at home or in a hospital setting. Who has power to make decisions for me if I am unable to make them myself? etc. It was a standard form for those with terminal illness. And I also believe this is standard protocol at most treatment centers and hospitals. Is it possible that your sister-in-law had something like this in place?

Regardless, if it were me, I would want to see a copy of the medical records while your sister-in-law was in the hospital. I would want to see who ordered and approved the stent, and exactly what was, and what was not, administered via the stent. Then I would want to read everything else in her record.

It is difficult to loose a loved one, I hope you are able to find peace. Until then may the happy memories sustain you.

Hugs,

Linda

camul's picture
camul
Posts: 2067
Joined: Dec 2010

also as to my end of life wishes. With questions such as feeding tubes? CPR? Antibiotics etc. I also had to list who my medical power of attorney would be, as well as where I want to be. I also have a blue sheet with info in case anyone would call 911 if I would pass at home, as they know to look for that on your fridge and then they would not transport.

I am really sorry for the way your sister in law passed. I don't know if that happens here, but I do know that family members have fought wishes of the patient when they have wanted only palliative care, even when in writing, and the patient ended up getting treatment when they had a DNR on file at the hospital.

I wish your brother and all your family the best with this.

CypressCynthia's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

I am so very sorry for your loss. Cancer is a beast and I hate what it does to both patients and families. It sounds like you sister in law was a special lady.

But I am confused about a stent? Do you mean an IV or a nasogastric tube? I would want an IV as IV pain meds can really help with pain. Food and IV fluids do not usually help with end-of-life care. In fact, they often make a patient much less comfortable. IV fluids can go straight to the patient's lungs and cause difficulty breathing (pulmonary edema). Appetite disappears near the end of life and nutrition can cause nausea and vomiting.

Ice chips, lemon swabs for dry lips, etc may be more humane options.

Here is an excellent link for families:
Comfort Care
http://continuumcarehospice.com/documents/Hospice%20Care%20Pamphlet.pdf

When my husband's grandmother was dying, the doctors did "everything" and the result was disastrous. She ended up with a surgical wound and infection that never healed (won't go into it but truly gruesome); every breath was a rattle and gasp, etc.

Her daughter, my husband's aunt, researched end-of-life care and, when she was dying years later from cancer, she died a truly beautiful death. She worked closely with hospice to let them know what she wanted and they titrated her meds in her own home to keep her comfortable. We visited her the day before she died and it was an amazing experience.

The moral of the story for me is to be prepared, make your wishes known, put them in writing, and, if possible, die in the comfort of your own home.

P.S. I have Stage 4 cancer, so you can tell I have thought about this a lot. I have a "Five Wishes" form which carefully describes what I want. My hospital gave me the form, but they can also be ordered on line: http://www.agingwithdignity.org/catalog/

SIROD's picture
SIROD
Posts: 2164
Joined: Jun 2010

Dear Charles,

My sympathies to you and your family on the death of your sister-in-law,

I have arranged via an attorney for my end of life directives. A copy has been given to my primary care physician as well as to my sons on what I would like to have done for me when I am no longer in a position to speak for myself and it is obvious that I will not recover.

I believe everyone should have these "end of life" directives in order to avoid the confusion that happened when your sister-in-law went to hospice.

What was done to your sister-in-law to withhold food and water is what I would like to have done along with pain medication when it is my time. I have stage IV breast cancer also.. I had a discussion with my primary care doctor about the water being held and asked for her opinion. She mentioned it was the kindest thing to do and why.

I am sorry that your brother and the family is having a hard time dealing with this lovely lady's death.

Doris

Rague
Posts: 3310
Joined: Aug 2009

I am so sorry for the loss your family has suffered in the passing of your SIL.

I know nothing about health care in England. Perhaps your SIL had "Advanced Directives" in place and the Drs were only following her wishes (as they should) when your brother was not present to make the procedurer easier on her and him? I don't know. It is always harder to understand what is going on (and why) when 'you' get it second hand (third hand as we are getting it from you). It is also often very hard for us to be objective/understand what the person's condition actually is when we love them so much and the thought that the time for them to leave is approaching so fast - we are never really ready for that time when the last breath is taken by our loved one.

My thoughts and prayers for your family's healing.

Winyan - The Power Within

Susan

VickiSam's picture
VickiSam
Posts: 8271
Joined: Aug 2009

My heart goes out to all of you brave... brave WARRIORS. :-)

Love, Hope and Peace.

Vicki Sam

disneyfan2008
Posts: 5383
Joined: Oct 2010

I had never heard the word "pallative care" until my mom wsa close to death 5 yrs ago.

Can anyone explain what the difference is with that vs hospice?

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