Embracing Hospice: End of Life Nutrition
What is embracing hospice? Why would you even want to do that? And what does this have to do with nutrition? Hang with me my friends. This is a blog you need to read. The topic of nutrition at end of life is one that is near and dear to my heart. It is a topic that isn’t given the bandwidth it deserves.
No one like to talk about death. It is painful. It is highly emotional. It’s often unpredictable. It breaks hearts. And it changes the living. BUT, we believe that end of life is just as important as any other stage of life. It deserves to be treated with dignity, respect, openness, and gentleness. This includes talking about it. This includes embracing it. And includes educating yourself so you will be prepared.
If you are a family member, caregiver, or healthcare provider of a dying person- I’m so glad you’re here. Over the course of this blog we will cover all of the hard topics you need to know about embracing hospice and end of life nutrition.
WHAT YOU NEED TO KNOW
Before we dive in, I want to state up front what you need to know. When someone is dying, they eat less food. It’s part of the process. And with this decline in eating, we know that families and caregivers experience high levels of emotional stress (1).
Here is the key point of this entire blog. I will reference back to it throughout. So remember this: For the person who is in the final stages of terminal illness, and is close to death, there is no proof that increasing calories (eating more food) will improve their strength, their energy levels, their ability to function, or even prolong their life (1).
Trying to force a dying person to eat will not extend their life.
Caregiver Hospice 101
Whew. I got that out there, so now let’s talk some basic caregiver hospice 101. The “what, who, and where” details you need to know.
First, let’s make sure we are on the same page for what we mean by “hospice.” According to the Center for Medicare and Medicaid Services, hospice is a program of care and support for a dying person whose doctor and a hospice medical director certify has less than 6 months to live. This service can be offered at home or in a facility and a member of the hospice team is always available- 24/7 (2).
The focus of care for hospice is on comfort and not curative care. This means that a patient must be willing to give up curative treatments in order to receive hospice care. Some people may not be ready to give this up and that is OK. For them, palliative care may be an option.
Unlike hospice care, you do not have to be dying or give up curative treatments to receive palliative care. Palliative care has a role in end of life care, but it is not exclusively for end of life. It is a treatment available to anyone of any age who is suffering from the discomforts, symptoms, and stress of a serious illness. Palliative care is meant to help people find relief from their chronic conditions and treatments (2).
And unlike hospice, which has a 6-month window, palliative care may be used for as long as necessary.
Who is the Hospice Caregiver
Who is the hospice caregiver? For the sake of this blog, a caregiver is anyone caring for a dying patient– whether you are a formal paid caregiver, a son or daughter, a grandchild, a neighbor, a friend, a hospice employee, or any healthcare provider. A hospice caregiver is any individual providing any type of care for a patient who is either on hospice or is close to end of life.
Hospice Care at Home or Elsewhere
Where is hospice provided? We often see hospice care at home. Home can be wherever an older adult may live- whether it’s a house, apartment, trailer, RV, adult foster home, retirement community, assisted living facility, or even a yurt in the woods (Yes, I’ve made home visits there).
Research has shown that 59- 81% of the general population would actually prefer to die at home. Dying at home has been found to improve family satisfaction, improve patient outcomes, improve “quality of death,” and decrease caregiver burden (1).
Hospice can also be provided in a nursing home, hospital setting, or even a separate hospice center (2). The setting in which an older adult received hospice depends on their individual situation, level of care they need provided, and time frame they may have left.
What is End of Life?
Just because someone is of old age does not mean they are at “very end of life”. But sometimes knowing when to accept that the “very end of life” is close can be hard. Often the hardest part of accepting or embracing hospice is the time frame associated with it. When you embrace hospice, to some, it may feel like they are accepting a death sentence. The thought that in less than 6 months the person you love or care for might not be there.
But the reality is that NO ONE knows exactly when someone is going to die. Embracing hospice means accepting help, getting the resources you need, and being OK with the unpredictable. And even if the person you are providing care for isn’t ready for hospice, that’s OK. This information is still relevant and will be helpful. We want to make sure you understand the details of nutrition at end of life.
Nutrition for older adults is different than nutrition at VERY end of life.
Definition of End of Life Care
So, what exactly is end of life care? According to the National Institute on Aging, end of life care is the support and medical care given during the time surrounding death (3). They make the point that this time is not simply the moments before breathing ceases and the heart stops beating. It is beyond that. It is the days, weeks, and even months before death. This is often the time frame in which hospice is initiated. But again, no one knows the exact moment death will come.
But we do know a time will come when an older adult close to end of life will transition into a phase known as “actively dying.”
Why Hospice is so important in End of Life Care
There are many barriers to accepting or embracing hospice of a diagnosis of “dying.” There is hope that a person will get better. Disagreement on how sick they may be. And failure to recognize the signs that a person is actively dying.
When signs of active death are missed the result could be increased suffering. Continuation of standard medical care can actually make things worse (1). Hospice is meant to manage uncomfortable symptoms in death, pain in particular, and contribute to comfort in the final days and hours of life.
Hospice provides exceptional care. It helps the patient have a “good death.” It helps the family have more peace of mind and satisfaction that their loved one is being taken care of (1). Hospice is so very important in end of life care.
When an Elderly Person Stops Eating
Now let’ get down to very end of life nutrition. I wanted to set the stage with hospice and end of life care first because it plays an important role in understanding end of life nutrition. Things change at end of life. So does nutrition and the way people eat. And what eating and drinking looks like during this time is different and it can be hard.
When an elderly person stops eating it can be distressing. Reduced food intake that occurs in the dying process can be very difficult on the caregiver and/or family. We associate food with nourishment with love. And we don’t want our loved ones to suffer.
Often times a well-meaning family member or caregiver may try to push, or force foods, on a loved one. They don’t want them to starve to death or feel they aren’t taking care of their loved one. However, forcing foods/fluids will not enhance or prolong life- it may be a burden or even detrimental.
The worst part is that this can lead to the “food fight” where precious time is wasting arguing over food.
The Food Fight
When end of life comes there are too few precious moments to be had between the dying patient and their loved ones. Issues around nutrition can affect those precious moments. From the caregiver feeling guilt that they aren’t giving enough food (or are causing a loved one to starve to death) to the dying patient who wants to please his loved ones, so he forces himself to eat and feels miserable.
The “food fight” includes arguments and fighting over whether a person at very end of life should eat. It could include fighting with the dying patient, with family, other caregivers, or even yourself (feeling like you are not doing a good job as a caregiver). When you are fighting about food you are wasting precious moments. Moments you could be cherishing because you don’t have much time left.
This is where embracing hospice and having knowledge about end of life nutrition can really come into play. This is also a key area where a geriatric dietitian can make an impact on the lives of the dying patient and their loved ones. Education and support in what the process of nutrition at end of life looks like is key. Knowledge is power and can end the food fight and take back those precious moments.
How Long Can You Live without Food Hospice
Before we dig deeper, I do want to address the elephant in the room. When someone stops eating, how long can they live without food? This is a tough one to answer, but I’ll do my best. The short answer is we don’t know the exact answer. The long answer is it depends.
Are we talking not eating much or not eating at all? People can live for quite some time while eating very little. Are they still able to drink fluids? Do they have ample fat stores? What other illnesses and disease processes are taking place? All of these factors can come into play. However, when someone stops eating all together, we know time left is short.
End of Life is Hard- The Emotions Are Real
This is very hard for me to write because as a geriatric dietitian I have yet to walk a loved one through this process. While I can connect to caregivers and healthcare providers on these experiences, I cannot directly relate to families. I haven’t been in your shoes. But I can sit with you and be there for you.
I’ve had many patients die and as a healthcare provider I’ve mourned the loss of patients. Even those “favorite” patients you are not supposed to have. I have cried along with families and caregivers. I’ve encouraged them and always let them know they are doing a good job.
I once had an intern tell me that she was afraid of having end of life conversations with patients because she was worried she would cry. I told her, that’s OK. Have the conversation anyways. There is nothing wrong with crying. It means you are human and empathetic to the feelings of those around you.
Whether you are family, friends, unpaid caregivers, paid caregivers, or healthcare providers… end of life is hard. The emotions are real. And there is no shame in feeling those emotions. There is no weakness in feeling sad, hopeless, frustrated, angry, distressed, or depressed. It’s part of the human condition. It’s what makes us and connects us. And it’s OK.
Anxiety at End of Life
So, let’s talk about emotions and anxiety at end of life. And I’m not talking about the anxiety and emotions of the patient at end of life. I’m talking about yours. About the emotions and anxieties, the caregiver has at end of life. An amazing research study looked at the emotional impact of hydration and nutrition and end of life. Researchers acknowledged that reduced oral intake (eating less) at end of life can be charged with emotional factors (4).
It can cause families who are not ready to embrace hospice to insist on forced feeding and pressuring their loved ones into eating (the food fight). In these situations there is a false perception that if only I can get my loved one to eat, they will live longer and feel better (4). It can also cause families to doubt healthcare providers. They can feel like their loved on isn’t getting cared for well, which can lead to a host of additional stress and anxiety (4).
Interestingly, when it comes to reduced intake at end of life, it is the caregivers who experiences the greatest amount of distress and not the dying patient (4). An anonymous healthcare professional was quoted as saying:
“I have had so many experiences of relatives and professional carers distressed because their loved one/service user hasn’t eaten properly. It would be great to be able to re-assure them from the strong position of empirical evidence that their relative is not distressed (5).”
We need to be having more conversations on end of life nutrition so that all caregivers can fully understand how it all works. This can help to minimize some of the anxiety at end of life they may feel.
Caring for the Dying Patient
Caring for the dying patient is hard. There is no doubt about that. There is so much to learn and know. No one talks about this stuff– especially end of life nutrition. So how should well meaning caregivers be expected to know any different? They are just trying to do the best they can to care for the dying patient.
I hope this blog article helps caregivers to understand the nutritional components of caring for the dying patient.
Let’s Talk About Hunger and Thirst
I hope by now you have a better understanding about hospice, end of life, and the emotions surrounding end of life and nutrition. I hope that you are gaining better insight into the importance of embracing hospice and learning more about end of life nutrition. And here is where we dive into end of life nutrition. First, let’s talk about hunger and thirst.
We know that persons at the end of life do not get hungry or thirsty in the same way a healthy person does. We know that decreased appetite and the loss of thirst are natural processes that allow the body to prepare itself for death (6). Let’s dig a little deeper. Starvation is not caused by lack of intake, but by the disease process itself. What does that even mean?
In a Healthy Person
To better understand this, let’s take a look at a healthy person first. In a healthy person in the prime of their life, food plays an important part in making the body work. The nutrition from food helps to build and repair tissue.
In this building process, our bodies use up energy. We call this “anabolism”- it’s like when we build up a wall of Legos, it takes some energy from us to make that wall happen. This is why we eat. Food gives us calories which is energy. We use that energy so our bodies can work hard to keep us functioning and alive.
In a Dying Person
Now let’s look what happens in the dying person. During the dying the dying process, the body shifts from an “anabolic” to a “catabolic” state. Instead of using energy to build and repair tissue, the body is now breaking down things to create energy. We call this “catabolism”- it’s like that Lego wall you built was smashed and the pieces fly everywhere releasing energy.
This is a part of the dying process. The body is in a catabolic condition. It is breaking down components in the body to get the energy it needs for life to end. It is this catabolic condition that leads to starvation and dehydration.
Let’s Talk About Starvation and Dying
This shift (from anabolic to catabolic) is a natural part of the process and occurs whether or not food and fluids are provided.
Think about that for a minute. Starvation at very end of life is not caused by lack of food- because a caregiver isn’t feeding them enough. It is caused by a natural part of the dying process. The body is an amazingly wonderful thing. From conception to birth to childhood development to changes throughout adulthood and even in death. The body does remarkable things.
Starvation is a part of the process that allows someone to die.
Will They Suffer?
But this leads to concern. When we think about starvation, we think about hunger pangs or feeling miserable. Maybe we even think about starving children in other countries or prisoners in containment camps.
Starvation in the prime of life is different that at end of life. Your body actually has processes that enable people to feel less pain. Did you catch that? Starvation in the dying process does not cause suffering, it can actually alleviate it. And isn’t that what we want for someone as they leave this world? To have as little pain and suffering as possible.
Let’s Repeat That Again
I’m going to repeat this again and explain a little more of the science. Starvation is a natural process that occurs at very end of life. It is not caused by lack of food but by the death or disease process itself (6, 7).
The body breaks down and uses nutrition in a particular order. When it runs low on energy (or calories from food), it uses glucose first (we get this from the breakdown of carbohydrates). The bodies default is to try to spare protein (our muscles!), so it will try to use the use fat as the main energy source. As fat is broken down in the body, ketones build up.
You have no doubt heard of ketones with the rise of the Keto diet. Well, ketones play an interesting role in end of life. As ketones build up, a condition called ketonemia can actually cause euphoria. It can also produce natural endorphins which help with pain (6, 7). Even small amounts of feeding can prevent ketonemia. This can prolong the sensation of hunger (6, 7). So, attempts to force eating could unintentionally cause more discomfort. Remember, ketones at end of life are good.
Starvation → Ketonemia → Euphoria, ↑ comfort
We’ve covered food, now let’s touch on hydration. Food and drink go hand in hand. Decreasing fluid intake also plays an interesting role in the dying process.
We know that water deprivation increases the body’s production of endogenous opiates that can actually reduce pain. Many studies show that when mouth moisturizing steps are taken (ice chips, lip balm, moistened swabs), uncomfortable dry mouth can be alleviated without the use of artificial hydration (6, 7).
So, if the mouth is dry and uncomfortable, drinking isn’t always the only option. Providing good mouth care can help!
What About Artificial Hydration?
Providing artificial hydration (an IV of fluids) may seem like a good idea when someone at end of life can no longer drink. However, research has shown that it just doesn’t improve outcomes at end of life (8). In general, it is not a recommended practice.
And if it’s not helping, why have them hooked up to one more tube or have another poke in the arm? However, it is ultimately up to the dying patient to determine if this is something they would like to pursue or not.
How Long Can You Live Without Water When Dying?
Like the question about how long you can live without food, this one is tricky to answer. It all depends and everyone is different. We do know that once food and fluids are stopped, life left is short.
One research study looked at nearly 200 nursing home patients with dementia who were taken off artificial nutrition and hydration. They found that over half of these patients passed away within one week (9). These results aren’t very surprising.
Managing Nutrition-Related Symptoms at End of Life
So, what can you do? Caregivers want to help. And there are things you can do to help manage nutrition-related symptoms at end of life. Doing so can help to improve quality of life. When reviewing this list, we want to remember that we are giving the patient an option for these interventions. We never want to try to force them if they can’t eat or drink more.
What Can I Expect?
Common nutrition-related symptoms at end of life may include:
- Poor appetite
- Dry mouth
- Mouth pain
- Nausea or vomiting
- Altered taste and smell
- Pressure injuries (bed sores)
What Can I Do?
Here is a very brief run through of some solutions for these end of life symptoms (10):
- Poor appetite
- Small, frequent meals with your very favorite foods
- Eat high calorie foods to get “more bang for your buck” when you can’t eat much
- Dry mouth
- Provide ice chips, popsicles, or moistened swabs
- Keep lips moistened with petroleum jelly or lip balm
- Mouth pain
- Try soft or pureed foods
- Eat bland, non-irritating foods
- Eat plenty of fiber as tolerated (start slow and gradually increase)
- Drink plenty of liquids – prune juice can be helpful
- Avoid those “trigger foods” that stimulate the bowels/ diarrhea (simple sugars, sugar alcohols, caffeine, alcohol, high fiber, and gas producing foods)
- Drink plenty of fluids and electrolytes to prevent dehydration with diarrhea
- Nausea or vomiting
- Eat bland foods (think crackers, toast)
- Limit sights, sounds, smells that trigger nausea/vomiting
- Altered taste and smell
- Maintain good oral hygiene
- Experiment with seasonings/flavoring (lemon juice, vinegar, herbs, etc)
- Pressure injuries (bed sores)
- Eat plenty of protein and vitamins/minerals your body needs
- Provide good cushioning, turn and reposition regularly (if possible)
Food Rules at End of Life
I want to come back to the food fight. Most importantly, how to end the food fight. In addition to becoming educated about the role of nutrition and hydration at end of life, there are simple steps you can take. Follow the food rules at end of life.
Most dietitians are familiar with Ellyn Satter. She has food rules known as the Division of Responsibility in Feeding for children and their parents. This successful model helps families develop healthy habits without fighting about food. We’ve created our own food rules for end of life. This is not based on any particular research study, it is simply best practice that may help you. There are roles for the caregiver and the dying patient. And they are so easy.
Role of the Caregiver
As the caregiver, your job is simple. You have 3 responsibilities: (1) Have food available, (2) Make sure those foods are their very favorite foods, and (3) Provide mouth care as needed. That’s it. It really is that easy.
If you are unsure what their favorite foods are, just ask. Sometimes foods can taste different towards end of life. They can be on a lot of different pills that affect taste. Ask what they would like to eat. Providing mouth care may include providing ice chips, applying lip balm, or using moistened swabs. Basically, you are trying to treat their dry mouth and prevent any discomfort in their mouth.
Role of the Dying Patient
The role of the dying person is even easier. They have only 2 responsibilities: (1) Eat when hungry and (2) enjoy food. If they are not hungry, it’s OK if they don’t eat. They can listen to their body without shame and guilt. If they are enjoying food then they should eat! If food makes them feel awful, then it’s OK to just not eat.
Providing education on these food rules can help both alleivate some of the guilt surrounding the patient and caregiver about “not doing a good job” when it comes to providing or consuming food and drink at end of life.
Wrapping it Up
We made it to the end! This blog contained a lot of information. Thank you hanging in there with me! I hope that you now have a better understanding of end of life nutrition and how you can embrace hospice.
Embracing hospice and the complications of food which come along with it includes educating yourself, educating others, being patient, and having some grace– with yourself and others.
Where Can I Learn More?
Do you feel like you are just scrapping the tip of the ice-berg? Well, you are. There is still so much more you can learn about hospice and end of life. If you would like to learn more, please check out the Recommended Resources for End of Life Care at The Geriatric Dietitian Store on RD2RD. This resource is free to you.
If you are a dietitian, caregiver, or healthcare provider and would like to learn more or have the tools and resources to educate on this topic, please visit The Geriatric Dietitian Store on RD2RD. There you can find:
- Nutrition and Hydration at End of Life Video
- A 31-minute video to get you prepared to have end of life conversations.
- Nutrition and Hydration at End of Life Handout
- A patient handout designed to guide you through these difficult conversations.
- Nutrition and Hydration at End of Life BUNDLE
- This includes both the video and handout!
Take Care of Yourself
Before we end this blog, I want to make sure we cover taking care of yourself. Being a caregiver is hard. Dealing with end life- whether it’s as a family member, a friend, caregiver, or healthcare provider- it’s always hard. And it can take a toll on you.
You can only take care of others to the extent you take care of yourself. Be sure to take breaks when you need them- speak up and ask for help if you see no opportunities for a break. Make sure you get enough sleep, good nutrition, plenty of fluids, exercise, and take care of your heart and brain.
This may include talking to a friend, going on a walk, seeing a counselor, going to church, prayer, meditation, taking a bubble bath- whatever you need to do to stay grounded. Be sure to take a moment every day to take care of yourself. You can find additional information on facing the challenges of caregiving on the Hospice Foundation of America website.
Thank you for all that you are doing- if no one has told you this today:
You are doing a great job. And you are enough.
(Feel free to use this infographic; please link back to this post and give credit to The Geriatric Dietitian!)
- Harman S, Baily F. Palliative care: The last hours and days of life. UpToDate Updated June 6, 2019. Accessed July 19, 2019.
- NIH National Institute on Aging website. What Are Palliative Care and Hospice Care? https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care. Updated May 17, 2017. Accessed July 17, 2019.
- NIH National Institute on Aging website. Providing Care and Comfort at End of Life. https://www.nia.nih.gov/health/providing-comfort-end-life. Updated May 17, 2017. Accessed July 17, 2019.
- Del Rio MI, Shand B, Bonati P, et al. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision‐making among patients, family, and health care staff. Psycho‐Oncology. 2012 Sep;21(9):913-921.
- Baillie J, Anagnostou D, Sivell S, Van Godwin J, Byrne A, Nelson A. Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions. BMC palliative care. 2018 Dec;17(1):60.
- Vadivelu N, Kaye A, Berger J. Essentials of Palliative Care. New York, NY: Springer; 2013.
- Fuhrman M. Nutrition Support at the End of Life: A Critical Decision. Today’s Dietitian. 2008; 10(9):68.
- Danis M, Arnold R, Givens J. Stopping nutrition and hydration at end of life. UpToDate https://www.uptodate.com/contents/stopping-nutrition-and-hydration-at-the-end-of-life. Updated December 13, 2018. Accessed July 16, 2019.
- Pasman HR, Onwuteaka-Philipsen BD, Kriegsman DM, et al. Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Arch Intern Med. 2005; 165(15):1729-1735.
- Nutrition Care Manual. Academy of Nutrition and Dietetics Nutrition Care Manual website. nutritioncaremanual.org. Accessed July 16, 2019.