From blogs, videos, podcasts and interviews, here you'll find resources that answer your questions about being an end-of-life doula.
and question whether we should be considering placement of feeding tubes and IVs to give artificial nutrition and hydration to a person whose body is dying. I have talked with many family members who still question this, even when their person does not want it.
Know this: it is the natural order of things that a person’s body dehydrates as it is dying. The dehydration a body goes through as it is dying is normal.It's not something we need to concern ourselves with fixing as we do when we are expected to live.
There are things we can do to minimize any discomfort from this, but we don't have to concern ourselves with turning this condition around.
There are some stories and some ideas I wanted to share about food and liquid as someone we love dies. We are all very passionate about our food .. more so now than ever. So listen to the stories with your heart and take in the concepts of what I'm sharing. Don't get stuck on the details. Take what you like and leave the rest for someone else to chew on. :)
For someone who can’t swallow small chopped pieces of food anymore, and you really want the person to eat or they ask for something, the simplest thing to do is puree or strain whatever the favorite food is. Puree a hamburger? Yes. A man I knew asked for chicken fried steak a lot and the family thought it was mean to bring him one since he couldn’t eat it. I asked them to bring it and see what happened. They told me he just wanted to smell it. After he smelled it, he was disinterested. What if he wanted to eat it? It could be pureed or a small piece of it could be put in his mouth for him to suck on or get the flavor. People are so different in how they get satisfied. Some want to smell; some want to taste, or lick or have it sit in their mouth or suck on bits. Make sure the person is sitting upright and that you monitor closely. Only give the tiniest bit and take it back out if it just sits there. Be sure to check with your nutritionist, nurse or doctor on how to do this safely.
So much of the time, it is to the loved ones that eating means so much. My mom was a couple of days from her death, mumbling in that deep ’sleep’ state, ordering a beer in Spanish in a restaurant in Mexico. My mom was English/Irish; Spanish was definitely her very far-removed second language. My brother and I looked at each other and he said, ‘go!’ So, I ran downstairs to get a beer and a teaspoon. Who knows if she was still going to be in the restaurant by the time I got the beer popped open and the teaspoon with 4 drops of beer between her lips. She nodded, ‘yes,’ when I asked if she wanted some. She received it, scrunched her nose and moved on. It meant a lot to my brother and me that we tried to give her what she wanted.
There are fewer times when it’s the person who really wants to eat and can’t, and we must think outside of the box for this. There was a woman who was dying of malnutrition because the radiation she received for her cancer melded her insides. She had intense nausea and vomiting for the previous several months when I began caring for her. She still yearned for food and kept trying to eat even though she was so close to death. She was willing to take the risk of putting a G-tube in her stomach that would drain the contents of whatever she ate or drank. It was unbelievable that no one had suggested this beforehand. She got to sip and bite on her favorite things. As soon as she put something in her body, it left it through the drain, but she was not miserable any more in longing for food, or in feeling heavy nausea and vomiting. She lived her last month better than in her previous year.
There was a family I served with a mother with congestive heart failure, liver disease and renal failure. What she could eat and drink was very limited with all these conditions and they had been managing a very careful diet for years. She did whatever her children said and ate whatever each child said she should eat when it was their turn to care for her. The pull between wanting her to stay alive and their desire for her last days to be pleasurable was agonizing for all the kids. The mom was ‘fine.’ She told me she just wanted them to be happy and would do whatever they said. We brought in a nutritionist and they worked it out. In about a few weeks’ time, she was eating whatever she wanted. Giving up the idea of what she should eat to live meant that each one had to face that her death would be sooner rather than later. The reality though was that whether she ate what she wanted or not, her death would be sooner rather than later. The relaxing that happened for everyone when they let go and "allowed" her to eat as she wanted was tremendous. But the grief they each had to face first was too. The avoidance of that grief is what was fueling all the tension.
This is a tough issue, that of eating and dying. My mom was dead within 4 weeks of diagnosis. My sister and I, being hospice experienced nurses, knew my mom was going to be dead very soon when she was diagnosed. She was a beautiful, fit, dynamic 61-year-old woman but we knew from her type of cancer that she did not have much time. My brother didn’t accept that. He did much research and bought foods and supplements, etc. that were not very tasty and my mom ate and drank it. It broke my heart because I knew he couldn’t let her eat what she wanted because he thought she could beat it by a certain healthy diet. I was chomping at the bit to scream to let her eat what she wanted because she was going to die. I loved my brother more than wanting to convince him of anything.
My mom knew she was dying. Some people really do know when they are dying and she was one of them. My mom ate all that weird stuff because she loved my brother and was loving him all she could.
It’s their love we want to feel. We hope that If they eat in a certain way, they will live and we can have our person's love in our lives.
When it is time to die and people we love are dying a natural death, there will come a time when they will not care so much about food and begin to lose weight. Then there will be another day when they will no longer want or need food and water. Loving them then will be shown through sharing, talking, quiet presence, touch, bathing and laying with and kissing and stroking on this person we love so much.
That is the food of the dying.