TPN (Total Parenteral Nutrition) and venting tube with Palliative Care - Erbitux and Irinotecan

Hi,

In regard to TPN, the question is... who is going to flush the port and hook up and unhook the TPN pump every day while he's at home?  Whoever that person is, they'll need to be trained by a nurse first through Hospice.  Remember, a Hospice nurse basically only comes out a few times per week to check BP/heart rate/amount of pain meds, etc.. (My Rick's nurse would only be in the house for about 15 min. to gather vitals.) In other words, a family member will need to care for the patient for the majority of the time.  But yes, TPN is often altready being administered by the time Hospice is called in for pain management. 

All my best,

Cynthia

annalexandria said:

I'm very sorry you and your dad are going through this.

It's such a hard situation.  We might be able to be of more help if you can give us a few more details.  Do you know the status of your dad's cancer?  I'm assuming he's stage 4, but there is a lot of variation within that category.  With an overview of his cancer history, I think more people may have some words of wisdom for you.  There's a lot of experience on this board, both patient and caregiver.

And just a btw...for many of us, "palliative care" essentially starts right from the get go of a diagnosis.  It means that they are focusing on managing pain and other symptoms that go along with cancer.  You don't have to have a terminal diagnosis to get it.  It can go hand in hand with treatment, which it sounds like is the case for your dad, but I can't quite tell from what you've said.

Chemo may be continued with hospice, if it's helping to shrink the tumors for comfort, and certainly TPN can also be a part of hospice (altho as LivinginNH said, someone does need to be trained to manage it...when my sister was dying, my BIL learned how to do all kinds of things that we normally associate with nursing).  The expectation with hospice, I believe, is that a person has roughly six months or less to live, although that may vary depending on the policy that covers it.  And certainly people do live longer, sometimes much longer, but the idea is that treatment is no longer being done with hope for a cure.

I hope this helps some.  I've been both caregiver and patient, and I have to say that I think being the caregiver is tremendously hard.

I hope we can provide you with some support as you go through this difficult journey.

Big hugs to you and your dad~Ann Alexandria

Edited because I am a dummy and can't keep people's names straight!

Oh Janice, you are so funny!  ;D

MOOSE74 said:

Thanks for the reply's

Thanks for the reply's everyone....Yes very, very hard situation.

I think Dad would benefit much more from Hospice at this point...

His cancer is terminal Stage IV....small bowel and colon and peritoneal (all over)

He can't eat cause his cancer is blocking his small bowel... so on TPN..

I was told that TPN and chemo could not be combined with Hospice...(which I don't believe is true.)

Right now my mom does all the nursing items....its too much. Dad does it when he feels ok.

He needs constant care....very fatigued, rash all over, very bad gas.., don't think he is honest about paoin.... going downhill quickly...

He is a very stubborn (Italian guy with lots of Pride) and not sure how to introduce hospice to him..

Let me know all your thoughts and transitioning him..

Help!!!

 

with hospice will chime in here.  I'm not sure who makes the "rules" for hospice, and it may vary depending on your dad's insurance policy.  Do you know how the hospice is being covered?  I would start there, and make calls to both the insurance provider (if that applies) and to the hospice itself.

Ask to speak to the hospice manager.

Where have you gotten your info on hospice so far?  As LivinginNH said, TPN was done while on hospice in her husband's case, and I've seen chemo done too, so long as it is meant only to reduce tumor size and make the patient more comfortable.

The other thing is this...what does your dad have to say about the situation?  As the patient, it will be his choice whether to go on hospice or not, so long as he is able to still make decisions for himself.  It will require a very honest, and probably very painful, conversation with him, and any other involved family members, maybe the doc too.

I will say that my sister had a very hard time accepting hospice, and didn't enter until close to the end of her life.  She had a hard time giving up the idea that remission was still a possibility.

Gosh, I am just so sorry you're going through this.   There's no easy way.  It's so hard for everyone involved. 

devotion10 said:

Hello … This is a long post ...

but there are many issues here and my heart hurts for you and your family.  If we were friends we could discuss all this over a nice cup of tea but here all I have are these words.

First, I am very sorry that your father has stage four colorectal cancer. This is devastating for your entire family.  This will not be an easy time now or in the coming weeks or months.  Find as much support as you can for yourself, your mother, and your father … and, of course, come here to ask questions or vent.

My husband died from his colorectal cancer this past summer five years after his diagnosis.  My son and I cared for him in our home throughout his illness.  He voluntarily ceased chemotherapy treatments six months prior to his passing and began palliative care only. The last three weeks of his life we had the pleasure of being assisted by a loving hospice team in our home.  I share my story with you so that you will know that whatever advice I give you comes from my heart and my experience. 

Your father’s terminal condition … You wrote in your message that your father is terminal … I assume this means that his doctor’s have told him that he will not survive his cancer and that his treatments are not curative, but designed to provide him palliative comfort even though his cancer cannot be eradicated or controlled. I am unclear whether your mother and father have discussed and accepted that his life is limited and the decisions for treatment should be aimed toward his comfort, dignity, and preparation for his inevitable death.

A turning point in treatment options … In my opinion, there comes a time when even if doctors offer more chemo or surgery to hopeful patients …  sometimes a family needs to make their own decisions together for the dignity of their loved one.  It seems your family may be at this turning point, but I am not sure how much as been openly discussed.

Continuing cancer treatment … If your father is going to die from his cancer, in my opinion, continuing chemotherapy that is making him physically ill, compounding his fatigue, giving him a rash … forgive me for being blunt, but I do not understand the point.  Providing extremely toxic drugs to a dying individual to provide them hope does not seem ethical to me.  This does happens all the time so please do not think I am targeting your father’s doctors.  Sometimes, I think doctors simply do not know what to do when they run out of options.

You described your father as stubborn … does he know he will not survive? Is he being given false hope by continuing treatments?  Are people encouraging him to ‘keep fighting’? This notion of ‘fighting the cancer’ leaves some patients with a feeling that they have ‘given up the fight’ when there are no more treatment options. I personally hate this type of language and think it potentially adds to despair at the end of life.

If you think of the purpose of receiving cancer treatment to improve symptoms through local control of the cancer, increase a patient’s chance of cure, or prolong a patient’s survival … are any of these things being accomplished by your father continuing chemotherapy?

It may be that your father’s oncologist is waiting for him to have scans and thus provide evidence that the last treatment option has not been effective … just so that you father will feel that he has tried everything.  The question remains always for me, quality versus quantity of life if the disease will not be survived.

Palliative care … as I believe AA stated in her message … palliative care is not, in my experience, a distinct phase of therapy and is generally addressed all through the patient’s cancer journey.  Although the doctors and nurses associated with palliative care are responsible for helping relieve some of the symptom burdens of treatment and also possibly teaching or assisting with specialized treatment like Total Parenteral Nutrition and a Venting Tube.

Total Parental Nutrition and a Venting Tube …, as I understand, one of your father’s cancer blocks his small bowel and he cannot eat.  As a result he has the TPN, which provides him with an IV solution, and then a gastrostomy tube has been placed so fluids can drain out of his stomach.  Venting the tube allows the air to escape and helps with the gas and bloating he experiences.

I don’t know how long your father has had nutritional therapy; it certainly can be helpful to avoid weight loss that is often associated with decreased survival and reduced response to chemotherapy.  Perhaps this was why it was originally started since the goal of nutritional therapy is to maximize quality of life. 

Maximizing the quality of life for the dying patient is different.  One of the contraindications for use of parenteral nutrition is a poor prognosis not warranting aggressive nutritional support.

Hospice … Entering hospice does not have to mean that your father is perilously close to death.  As another poster mentioned, her husband had been on hospice for months.  What it does mean is that if cancer treatment is of no benefit and there are no further treatment options available … you can help ensure that your father has quality of life by addressing his physical, emotional, and spiritual well-being as he begins his journey to the end of his life.

From my experience, many things are provided in home hospice; it is both an extreme challenge and honor (but many families and patients do better with institutional hospice programs.) Medications to relieve pain are provided; oxygen, medical supplies like a walker, wheelchair, or hospital bed are offered, as well as emotional and spiritual support, respite care and assistance with day-today tasks.

Obviously, active chemotherapy ends once one enters hospice but nutritional support does not have to stop if it provides comfort and symptom relief.  Although nutritional support does not have to stop, it is somewhat controversial.  The goal of nutritional therapy is to maximize quality of life … but maximizing the quality of life for the dying patient is different.

It is difficult to assess the benefit of TPN in patients with incurable cancer. Selective patients may be aided by TPN, but since hospice is designed to allow the body a natural, comfortable, and dignified progression to death … artificially- induced feeding may at some point provide discomfort for a patient and prolong suffering.

Transitioning  … you asked for thoughts regarding transitioning to hospice. The practical aspects of this may vary but for me I began with a conversation with my husband and I ask him what he wanted to do after his condition began to obviously decline.  If I had waited one week longer … he would not have been able to decide this for himself.  Timing can be important with these matters.

For you, this may be premature because your father is still being given the most likely false hope of chemotherapy and may not understand why you bring up hospice.  If the doctor has promised him scans to assess the effectiveness of the cancer, he may balk at not being allowed to see if there have been positive results of a treatment he has endured.

You state that your father needs constant care and is going downhill quickly … if you focus on that for a moment … if it is known that your father will not survive his cancer … that your father will die from his disease … decisions may need to shift quickly regarding his treatment and care.

If a rapid decline is evident, his doctor needs to know this.  Perhaps if the suggestion that given his terminal condition further treatment may do more harm than good and the suggestion to enter hospice comes from his doctor he will accept it more readily.

Your father’s oncology office can make the official recommendation for hospice care that then allows admittance or home care to begin. 

I know you and your mother want to hold on to your father desperately.  Having been through the experience of death with my husband … I urge you to be realistic and try to make however much time he has left be as peaceful and dignified as possible.  Gather every bit of strength you have to make this possible.  My heart goes out to you.

Peace. ~ Cynthia

 

You've said it all,and I don't think anyone could have said it better.

Carl