Hospice and palliative care programs offer pain management, symptoms control, psychosocial support as well as spiritual resources to patients and family members when cure is not longer an option. Debunking the Myths of Hospice is a very well written piece that addresses many of the misconceptions associated with accepting hospice care. Under the heading of "Caregiving" is an excellent article about artificial nutrition and hydration at the end of life.
Not required, but additional information from a caregivers perspective, Family Caregiver's Guide to Hospice and Palliative Care.
Access the Hospice and Palliative Nursing Association link on the right side of the blog, under education you can listen to free podcasts. If you choose to become a member, they have free continuing education offerings at the Advanced Practice, Registered Nurse and Nursing Assistant level. I have been a member for almost ten years and find their website and newsletters to be outstanding.
Questions
- How does Palliative Care differ from Hospice? Who qualifies for hospice and what services do they offer?
- Why to family members and caregivers become so distraught when their loved one stops eating or drinking? How would you explain to them that they are not denying care by not forcibly feeding their loved one?
Discussion Question
Feeding someone is an expression of love and caring, to stop feeding a loved one is almost unthinkable. The following article was written by my favorite nurse writer Theresa Brown. No actual discussion, but you can add your thoughts to the blog if you like. I think what she has to say speaks volumes to us as nurses and as human beings. Love, Death and Spaghetti - I guess while you read this article you can also enjoy free access to my New York Times subscription, just please don't complete any of the crosswords 😊.
I hope everyone enjoyed this months articles - send your answers to melissa.luebbe@ctca-hope.com, no articles for December. Please enjoy your holidays and our third post will appear sometime around the first week of January 2020.
Thank you for sharing the Love, Death and Spaghetti post. It really made sense to me and will help me when dealing with family/friends who feel they need to force feed.
ReplyDeleteYes I agree with you Sarah, this article came to me a little late, but I learned a lot for its use in the future!
DeleteSigh....this is just hard. I know that, in our home, I feed people. I feed them and bake for them because I love them and I want them to feel my love and care. So this must be very difficult for caregivers. Definitely something to bring up gently in conversation, acknowledging their loving intention, all the while encouraging caregivers to perhaps find other ways to show their nearness and loving support of their loved ones as they pass from this life.
ReplyDeleteJen, I agree we as nurses can maybe kindly suggest other ways in which loved ones can comfort their loved ones during the dying process. It is difficult for all involved but sometimes caregivers just need to have a gentle reminder and suggestion.
DeleteI witnessed this with my dad as my grandmother was dying this fall. The last time I visited her he was gently feeding her yogurt. My dad was a paramedic, and understood better than most, but it definitely squeezed my heart to watch him encourage her to eat just a little bit. Thank you for sharing this, definitely serves as a good reminder for us all.
ReplyDeleteHi Katrina,
DeleteIt really becomes hard when it is our own family. Even though we understand, we find ourselves in that same feeling of am I depriving them of something they need or love? It takes us a moment of someone or something to remind us what is important as a caregiver. Thanks for sharing this!
I remember recently as an Uncle was passing his son kept saying, "Dad you need to eat". Then he would look at the family and told us that the hospital was killing his dad because they are not making him eat. This is very hard concept even for nurses. I watched my mother, mother n law and this uncle go through the stages of dying in a six month period of time. It is another step in the body shutting down, like an organ shutting down. It doesn't make it any easier to accept a loved one dying but, as Katrina said, it is a good reminder and to keep it in mind when we are working with our patient's and their families during this difficult time. Thank you Melissa for sharing.
ReplyDeleteAgreed, a very difficult process to witness a loved one progress from limiting and then ultimately refusing oral intake. I recall using smaller and smaller plates when feeding my Mom as the amount of food she would take got less, the same went for fluids-used tiny little juice glasses then even smaller sherry/shot glasses.....I guess for me it made the reality seem less drastic and painful...
ReplyDeleteJulie,
DeleteDownsizing the plates/cups for your Mom to me speaks volumes of your kindness to her. We are all made to "finish our plate" as not to waste food. What a wonderful and kind gesture. Pat
I can totally relate to this story. I have elderly parents, my father has dementia and my Mom cooks for him daily.I can only hope I cope successfully when the time comes.
ReplyDeleteMary, I feel for you. It is difficult sometimes to navigate the role of being both a nursing professional and a daughter.
DeleteI have also watched family members during this process. My in-laws were in an assisted living her in Zion. We knew when Earl was "shutting down" as my husband would say, because he started drinking the half and half creamers and eating the little packets of jelly just as Marylou had done. This prepared us.
ReplyDeleteMy brother visited my Mom every day at the nursing home - she had Alzheimer's - and basically force fed her. I had many talks with the nurse's on how to "kindly" make him back off as it was to the point of possible force feeding. When she had another bout of urosepsis/AKI that was our golden ticket. I had them discuss her kidneys and he cannot go into the kitchen and get Ensure and feed her 2-3 cans per meal. For him it was out of love/desperation of loosing Mom.
I remember you going through this, Pat. I'm glad that your wisdom as a nurse allowed for advice that was heeded by the staff.
DeletePat, we are so lucky that we are in this profession so we can guide the people that feels that "we don't care", but in fact we do.
DeleteIn the nursing home, as Dad had a few mild strokes and could not swallow well, all of his fluids were thickened. During one visit, he asked me for a drink of water from his tray. It was like a gel, I picked up the glass, turned it upside down, nothing moved in that glass. I looked at Dad, we both starting laughing. His drink of water was this ridiculous glass of gel. It had come to this, but Dad still had his sense of humor. No stroke would take that away from him. Donna Krickl
ReplyDeleteDonna,
DeleteThe nurse educator at a SNF that I worked at had us drink (and eat) the different consistencies of thickened liquids. It really help to explain why several of the residents would sneak and drink regular liquids. It did not really quinch my thirst at all. I am happy that you and your father maintained your sense of humor during a trying time. Patricia Adams.
Theresa Minniear - clinical research
ReplyDeleteI enjoyed this article. I watched my Grandmother die in front of me, while in hospice. I still remember the tray that was delivered about an hour before she passed. While no one tried to offer it to her, at the time I wish they would have instead stopped in to ask if it was wanted. The aroma of the hot soup sitting there, getting cold, only accentuated what was soon to come.
That is so very sad and hard. I think we sometimes forget the little details like this when doing "tasks" instead of doing "care". I can only imagine all the things we do on routine that patient's and family perceive differently. You remember this detail very clearly as a gesture of inattentiveness while that may not have been the intention of the person who left the tray there. It is a good reminder.
DeleteI remember it clearly we have a patient here and he told me he cannot eat anymore everything he eats just comes out but he would like some Filipino eggrolls . the next day I fried some and delivered it to his hotel. the next day I saw his wife and he told me how happy he is and he was able to enjoy the eggrolls . It made so happy just knowing that I was able to grant his wish.
ReplyDeleteThis comment has been removed by the author.
DeleteIt's angels like you Vilma God uses to bring joy into others' lives. Thank you for sharing your love and care and being available for those in need! God bless you!
DeleteI have seen this many times when I worked on the floor, and also felt it myself when my grandpa was passing. One patient in particular, her husband was trying to feed her all sorts of things that she loved. He would have tears rolling down his face as he tried to spoon feed her and would get soooo happy when she would accept the food or make any kind of noise. It broke my heart. It was so hard when he would leave at night and he would hold our hands and plead for us to try to feed her while he was gone. It was so hard to explain to him the processes that were happening in his wife's body and that food was not the safest for her at this time. He understood, but it broke both of our hearts. After she had passed, he came back and brought us treats and they were her favorite that she always told us about and had when we took care of her. It was so sweet. I think a few of us had tears in our eyes. Truly the sweetest people.
ReplyDeleteStephanie, I really appreciate your story...It is heartbreaking to see caregivers' distress when their loved one no longer wants to eat. I think they feel so helpless when not even the favorite treats are enjoyable anymore. I loved to hear how the husband brought you his wife's favorite foods for you to enjoy. It may even be a strategy to use when supporting caregivers during the dying process. Maybe they can no longer provide food as a means of enjoyment to the dying patient, but they can serve others the patient's favorite foods and recall the positive memories associated with them.
DeleteThe fact that dying is not something we can't control, we humans are aware that this is a process we will all go through no matter what. As the old people say, "only time can tell." As a nurse, we can't be upset if we see family members doing everything what they want to do for a family that is close to dying, rather, we need to learn the art of empathy and compassion in order to guide them into what is best for the patient. As a nurse, I have seen this situations so many times. I even was once into this situation when my mom was in the ICU for 16 days and all I can hear from the doctors is the phrase "only time can tell but we are doing are best." It was very hard to cope and all I did was deny the fact that her imminent death is coming. The supportive people surrounding me has become my comfort zone and relief and because of that I learned to accept. In the story, I realized that we will always want to give the best of what we have and what we can because we want to cover up our guilt because we are helpless and can't do anything for our love one because it's just a matter of time. We also have to remember that the most important thing to do for our dying love one is to reassure them that we are okay even if they leave. It is only through that action that we make them free because we have accepted the fact their dying is just a matter of time... and that time is now.
ReplyDeleteThe message from the article is very relevant scenario to anyone faced with end of life challenges. I could relate that denial is probably one top reason for someone to overdo things when faced with imminent death reality, such as force feeding and letting a person to get up and just be active, etc. Spending time explaining the normal process of death and dying relating to the physiologic changes beneath the process would be a good start to bring the person to the light of reality. It will take time and many sessions to guide their thinking process to deal with actual reality.
ReplyDeleteSorry, forgot to label the above response: This is Ninfa Bontes 11/22/2019
DeleteWhen my aunt entered an inpatient hospice unit, her children and siblings didn't understand what that meant. She had end-stage CHF and was semi-comatose. I spent a lot of time trying to help them understand that feeding her could cause her harm. She was past the stage of "comfort feeding." I think when medical professionals tell you that there is nothing else they can do, some families try to do anything the can to prove them wrong and helping their loved one get stronger and eat seems to be one method to meet that goal. I explained the risks: aspiration, pneumonia, and choking, all of which could lead to pain and take away her peaceful state. Luckily for her, they finally came around and understood that God's will would be done and if he wanted her to eat, she would be in a state to do so. Patricia Adams
ReplyDeleteI experienced this with my mother this summer as my dad passed away this July, 30, 2019. My mother actually, momentarily, became upset when I nudged to back off from feeding dad so aggressively.
ReplyDeleteMy dad's appetite was a way my mother gauged my dad's health as well as her showing her affection to him.
In the last week before my dad passed away, he didn't have the strength to swallow and my mother came to terms that we were loosing him.
If I, being a son, could offend my mother, we can realize, as healthcare professionals, our suggestions of withdrawing food can be taken negatively by family members.
Elisha,
DeleteSo sorry for your loss. It’s hard to step on moms toes, but it was necessary for your dads comfort and end of life. It was probably what your mom needed as well to start the letting go process. It’s all in the delivery of how we go about asserting ourselves and advocating for the patient and our loved ones.
Hugs,
Brenda Chiappetta
Elisha,
DeleteI agree that people are offended by their own family members, how much more offended will they be when a healthcare provider suggests not eating. A good philosophy to exhibit is love conquers all. We as healthcare providers should not pass judgement rather than show an abundance of compassion and love for the situation.
I think as nurses we understand the process and it makes sense to us. When my mom was passing my oldest sister was constantly trying to make her eat and really believed that it would make her better. She finally quit coming at meal times as I think it was to hard for her. I know that when people are stressed many tend to eat for comfort and believe the same for their loved ones. I think as nurses we can suggest other comforting measures during these difficult times that the loved ones might appreciate instead of focusing on eating.
ReplyDeletePam,
DeleteThe story of you sister trying to feed your mom is very common. I am glad she had you around to help support and educator her during these difficult times.
Sue U
ReplyDeleteI can relate to all of this, my father just recently passed away and I was the one to make the decision for putting him on Hospice. Also when I would go to visit at the hospital, my only comfort was feeding him ice chips. My father also had dementia so I couldn't relate to him in a way to see how he felt about any of it.
Sue,
DeleteSorry for your loss. Dementia is very heart breaking to watch a loved one go through. I’m glad you found comfort in feeding your dad ice chips and I’m sure he enjoyed it as well. Regardless of how small or insignificant something is, they are memories nonetheless that you will cherish forever!
Hugs,
Brenda Chiappetta
This is a very good article. Although I see this quite often as a nurse, I haven’t had the opportunity to experience this with my close family. No one knows exactly what they will do in a particular situation until they are faced with that situation. I think many people think that if you don’t eat or drink anything for just a few days that death will occur much sooner. Depending on how much body fat the person has at that time would be one of the factors of how long that person could survive without food.
ReplyDeleteNonetheless, it is a wake up call that our loved one is entering the end stages of life, and we instinctively try to do whatever we can to keep them around just a little bit longer.
Brenda Chiappetta
The concept of not eating near death, is incomprehensible to most people. Food is an important element of gathering and socialization. I can't think of one gathering where there was not food. Personally, at my home there is always food and conversation. This article is excellent and relatable. Hopefully we take this information and store it in our memory banks to use and share with others when the inevitable time comes.
ReplyDeleteI agree Sheila. This is one of those articles you want to remember because we may have to use this knowledge in the future to help ourselves or our own family members. Death is a part of life, but the decisions made during end of life care are never easy.
DeleteThis article was a good reminder that there is so much teaching that needs to be at the end of life. Nurses are great educators to help families understand the normal process of the human body shutting down and/or not being able to receive intake any longer. Understanding that there are cultural, religious and family traditions and having empathy towards their beliefs and requests is important. Food is a part of our everyday lives. We use it to show love, celebrate milestones and mark holidays. It's hard to make a decision to withhold food when you are making decisions about a loved ones end of life care.
ReplyDeleteThis was a good article and a good reminder to remember the small details that could make a difference in a patient/family during the end of life care. I remember when my best friend was dying of cancer and I could see ever bone in her body. She was not able to eat anything due to nausea and constant vomiting. Food was her comfort and for some reason taco bell was one of the only things she could keep down (gross, I know, but it was good to her). I bought her taco bell the last time I saw her and she couldn't eat it and I remember how hard that hit me.
ReplyDeleteI enjoyed the article. Food is a very important part of life for everyone. So when a loved one who is ill can no longer tolerate eating, it is scary for most. As nurses, we are able to educate families and allow them to have a better understanding of the dying process.
ReplyDeleteOne of my mother's favorite statements is "Food is love." And for her, it has been. I recall the joy she had when my children would eat extra servings of a meal she made for them. She has remembered their favorite foods and it has always been important for her to have those foods at special family gatherings. When my grandfather became a widower and when my uncle divorced, she always made sure they were invited to our home for Sunday dinner. And for Thanksgiving, we make certain dishes because she has had them "every year for over 80 years, and we aren't stopping now."
ReplyDeleteI am fortunate that she is a nurse, so she does understand the dying process and she did not become distressed when our family members she has cared for stopped eating. It is difficult for me to watch though, as she has begun to experience her own health issues and her zeal for food is decreasing....
This comment has been removed by a blog administrator.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDelete