you mean they are just going to starve to death?

For some time now I have been wanting to share information here about tube feeding or artificial hydration & nutrition.  In particular, about its role for people with a serious illness.  This week, after hearing yet another family member say "you mean they are just going to starve to death?", when faced with stopping tube feeding or TPN (total parenteral nutrition - feeding in the vein), I decided tonight was the time.  

Let me start with some basic statements about tube feeding and IV fluids or TPN in general:

1.  People with serious illness who are nearing the end of their lives die from their disease, not the lack of nutrition. 
2.  Continuing (or initiating) tube feeding in people whose bodies are shutting down can increase discomfort.  
3.  Continuing IV fluids or TPN can do the same as #2 above. 
4.  When people are aspirating because they can no longer swallow safely, tube feeding doesn't stop them from continuing to aspirate. Even if they are not eating food, they can aspirate on saliva, which just as easily can cause pneumonia.
5.  If someone has a serious illness, and they are still in reasonable health, with a good functional status, tube feeding can make sense.  Examples include patients with ALS who can not swallow, a patient with a cancer that is obstructing their gastrointestinal tract, patients with head and neck cancer receiving therapy that make it difficult if not impossible to swallow. 
6.  Patients with advanced dementia do not benefit from tube feeding. Careful hand feeding may be enjoyable to them.
7.  Most states have laws that allow for withholding or withdrawing tube feedings, especially if a patient has some written directive that outlines their wishes.  
8.  Tube feeding does not automatically make people have more energy or gain weight. 

The decision to receive artificial hydration and nutrition should be based upon an individuals personal goals.  Before getting one may I suggest that you write out all the reasons why you think it will be helpful.  Then sit down with someone who can provide the facts on whether tube feeding or TPN will accomplish what you are hoping it will.  At the same time you are asking about benefits, ask about side effects of tube feeding.  

My goal tonight was to open a discussion. In right around 400 words. Questions are encouraged. Next week I will tackle the topic of "comfort feeding".  

P.S. please note I have including nothing here about the pediatric population and tube feedings. I have no clinical experience in that arena.  

Comments

[Susan]

Good conversation starter! We often do too much at end of life in my humble opinion. People forget that death is inevitable for us all.

[Emie]

Thanks Carol for tackling the uncomfortable health issues that we all face at some point. IMHO... it's in our best interest to find out about these things before we're face head on with it. I also believe it's very helpful to have an advanced healthcare directive. I'd love to hear your take on that. THANKS!!!

[Chris oliveira]

I experienced these questions first hand when my mother was nearing the end of her life. She had Parkinson’s disease, and swallowing became more and more difficult. But she was always determined never to have a tube, and she made sure I knew that. So I never did make that decision for her, although it was so hard to watch her struggle. In the end, she simply stopped accepting food and liquids. She was given medication to keep her comfortable. I always wondered if a tube at an earlier point would have made her more comfortable and prolonged her life. Maybe yes to the first. She has been gone a long time, but these questions still sometimes haunt me. I know at least that I followed her wishes. I just wonder sometimes if her wishes would have changed had she been able to express them when her swallowing became so difficult. I did work with a pediatric population, and the issues are different. It is often neurological damage rather than disease that impacts swallowing, and kids can have tubes and still live long lives.

[Vicki in Michigan]

Thank you for working to educate us.

[Missy]

Spot on explanation...well done.

[carol]

Chris: in everything you have shared the most important thing to me is your mother did not want a tube, and made her own choice. It is likely she felt being unable to eat "normally" would be a quality of life she would not find acceptable. In my experience, as the body declines and is able to take in less nutrition, people tell me they are NOT hungry. Thank you for talking about this here. I tell families often that decisions made out of love are never wrong. What I hear in your story is a lot of love.

[carol]

Emie: I am a huge proponent of having an advanced directive and making it clear to your decision makers (DPOA for medical decision making)what you want. Reminding them that it is their job to be your voice if you can't speak for yourself. Sometimes DPOA's tell us what they want instead of what the patient told them to do for them. We gently remind them what their job is. I have done several posts in the past about advanced directives and they can all be found under the palliative care category in the archives.

[carol]

Susan: you are so right, death is inevitable, and we all have choices to make about how we end our time on earth. Some people want to do everything that might extend their time, and go out "fighting" which can be chaotic and uncomfortable... others value peace and comfort over the possibility for more time. Neither way is right or wrong. Just what makes the most sense of us.

[Caroline Berk]

It is always difficult to make the decision, even when you know what the patient wants, My father's directive was for no tube feeding, After a stroke that left him a shell of himself and an operation to clear a bowel obstruction, surgery which caused pain and offered little chance of recovery in full, we decided to take him home and keep him comfortable. I often wonder if it was the right decision - nearly as often as I know was. Thank you for sharing your knowledge and caring with us. It makes it easier.

[carol]

Caroline: it was, it was, it was. Because it honored his wishes.

[Maria]

My MIL died in January 2018 after a couple of years with Parkinson’s and mild dementia. My husband and I had spoken w both his parents about what they wanted. DNR was in place and we were asked about a feeding tube which we denied in accordance with their wishes.
The hard part was the waiting. My MIL wasnt in pain, wasn’t lucid the majority of the time, and slept nearly all the time. The hard part was the waiting. The doctor had said she felt my MIL was about 72 hours or so from dying. It was 8 days. Every day we would go see her, wait, watch, say our goodbyes, sing to her. At first there was a strange comfort in the routine, but by about day 4 it became very hard. Unfortunately at one point a nurse questioned our decision (“doctor’s dont know everything and some people recover” Geez thx for the big dose of guilt, are u kidding me? ) She did pass quietly and peacefully in the end. I guess my point is that once we made the choice to carry out their wishes there really was still a great deal of uncertainty to live with as we waited.

[carol]

Maria: we always try to prepare families for this "prolonged dying" that you describe. Firstly, because it happens a lot, secondly because as you stated, we DON'T want families to second guess themselves, and question that they are doing the right thing because everyone's body shuts down in its own time. Our job is to ensure that peoples wishes are followed and they are comfortable as they are dying AND that families feel well supported. I hope you know what you did was exactly the right thing.

[Maria]

Thank you so much Carol. The patients and families in your care are really blessed. Yes, we did know it was the right thing. And it’s also a big co fort to here you express it too.
Blessings..

[Carolyn Dietrich]

Thank you for sharing this information. It helps me understand how to fill out a Living Will.

[Michelle]

I've been doing a lot of reading on this topic because I have young onset Parkinson's Disease and as the days get harder, I think a lot about how I want things to go in the end. The short documentary End Game on Netflix was particularly helpful. It is very hard to read people's descriptions of loved ones dying with Parkinson's...adds to the fear and uncertainty. I am essentially alone in my battle with PD. When I was diagnosed (at 43), my parents told me to end my life so I wouldn't "end up being a hassle to my son & everyone around me." (Needless to say, I have basically cut ties with them.) For his part, my adult son has a good heart but has made it clear caregiving is not his gig. I worry quite a bit about dealing with the "end game" alone, especially so many discussions about end of life care assume the involvement of family. I wonder how things go for people who have no one. (I do have close friends who help out quite a bit but I don't think the intimate & complicated health decisions of late stage PD fall into their realm of responsibility or expertise.) Anyway, I always appreciate your forthright discussions & explanations regarding palliative care.

[carol]

Michelle: I am responding to you in this public forum as information for others, but I would be glad to have you contact me via -email for more private discussion. Please seek out a palliative care team in your health care system, for a frank discussion about options for care in your area, with your specific situation. We often encounter people who have no family. Careful thinking and planning is so important, but you also need someone to help you understand what your specific needs may be and how they can be best met. Carol