Tube Feeding


Called to the hospital to admit an 86-year-old woman who had suffered a stroke, I found a distraught son of Indian descent. He and his mother had emigrated from India. She had been unresponsive since her stroke and had gone several days without food, although she had been getting fluids and electrolytes through an IV. The son, worried she was starving to death, had been offered a tube feeding for his mother and he was conflicted whether to have it placed. He wanted her to get better, but wasn’t sure if the tube feeding would give her that chance.

So I asked him, “What has the doctor told you about your mother’s condition?”

He said the doctor didn’t know whether she would wake up or not, but that every day that went by made it less likely. I then asked, “What is your goal for you mother at this time?”

He said, “Well, if she will wake up and go back to how she was before, I want to give her that chance. I think the tube feeding would sustain her until she can get better.”

“And what has the doctor said about that happening?”

He said, “The doctor said if she wakes up she would need a lot of therapy.”

“And how was your mother doing before the stroke?” He described an elderly woman who had more and more difficulty getting around. She’d had falls and was losing weight. He had been working “on building her up” but she was weak and wouldn’t eat enough.

I said, “It sounds like your mother was not doing very well even before the stroke. She was kind of in a downward spiral. Do you think she would want to go back to that, but, possibly even more debilitated?”

He was conflicted. He explained that if there was a chance she could get better he wanted to give that to her.

This loving son needed to understand all of the issues surrounding tube feedings, or artificial nutrition so he could make a good decision for his mother. But first of all, we needed to explore what his mother had indicated she would want in such a situation. So I asked him, “Does your mother have an advanced directive or a living will?”

He said, “No, she did not.”

I asked, “Did you ever have a conversation with her about what she might want done in this situation? Is there anything you can remember about what she would want?”

He thought and said she never indicated anything to him about this. In this circumstance, it is up to the son to make the best decision for his mother; always keeping in mind his first responsibility is to do what she would have wanted.

The Hospice and Palliative Nurses Association (HPNA) has a position paper on end of life artificial nutrition and hydration, which is helpful.

The paper acknowledges the reasons families and patients would want artificial nutrition and encourages an individualized decision. In this situation the goal would be to sustain the patient until her body could heal itself and she could return to eating.

However, the woman’s health was not good when she had the stroke. She was weak, not walking much, not wanting to eat and losing weight. Her son agreed that her quality of life was not good. Now she was unconscious for five days after her stroke. If she woke up again, she would face the left side of her body being paralyzed. She likely wouldn’t be able to swallow well, putting her at risk for aspiration pneumonia, and she may not be able to communicate. I explained to her son that if she was able to complete physical, speech and occupational therapy that she likely would not ever return to the condition she was in before the stroke.

I also explained the problems with artificial nutrition. Aspiration of the formula into the lungs can occur causing pneumonia. Sometimes people have diarrhea due to not tolerating the formula. There is risk of the body getting too much fluid at a time when the kidneys are not functioning well, thereby not excreting the extra fluid, causing extra strain on the heart and the breathing. This can make the patient uncomfortable.

The son, a good son, concerned about his mother’s comfort wants what is best for his mother. He is genuinely concerned about her starving. He doesn’t want her to be uncomfortable because of hunger.

I can remember when I was a young student learning that a person can go 2-3 days without water and 4-5 days without food. In hospice care it is not unusual to have a person, debilitated by their disease, stop eating and drinking and still live for 2-3 weeks. A person who takes fluids, but not food can go longer, months even without nutrition. Nearly everyone who dies in hospice care, no matter what their age or their disease process, stops eating and drinking in their last few days. We always offer food and water, but they refuse and if able, they tell us they don’t want it, they are not hungry. It seems to be nature’s way of saying; this body doesn’t need food anymore.

We also know that if we give fluids artificially in the last few days of life, when the organs are shutting down that fluid can be retained by the body causing swelling in the extremities, and excess water in the lungs and around the heart making our patient very uncomfortable as they gasp for air and struggle to move heavy swollen limbs around.

The concern that a person is starving to death probably comes back to our way of nurturing those we love. We feed them. When we can’t feed them we feel at a loss as to how to nurture. Very few people starve to death in the United States. People die of cancer, heart disease, stroke…but they don’t starve. Just because they don’t eat in their last days or weeks of life doesn’t mean they are dying of starvation. They are dying of their disease process. Nurturing can be achieved in other ways; a quiet presence, a hand squeeze, a quiet conversation, reading together.

I was aware during our conversation of possible cultural differences I did not understand surrounding this family and their decisions. When encountering a different cultural milieu, sometimes I am aware of what particular customs or beliefs are important in that culture, but even when I think I know, I always like to ask. Just as in the United States, different families have different cultural beliefs and customs, so do individuals in other cultures. So I asked the son if there was anything in his mother’s belief system that would indicate to him what he should do. He said, no, nothing.

He paused for a minute with a pained look on his face. He clearly wanted to do what was best for his mother but was reluctant to let her go. She wasn’t thriving before the stroke and he had been trying to improve her health by giving her nutritious food and trying to get her to eat. He had been trying to strengthen her, by walking and guarding her against falling. He knew she wasn’t doing well, but he’d hoped he could turn that around. Now she was worse, much worse than before. In that moment he faced the reality of his mother’s condition.

When the son was informed of all the issues, and when his questions were all answered, he was decided. He would not use a tube feeding. He had tears in his eyes as he realized his mother was dying. The time had come to stop trying to help her get better because that effort was futile and perhaps would even cause her more discomfort. It was time to sit by her side, hold her hand and tell her what a wonderful mother she had been.


Please God, don’t let it be me


A colleague of mine has a 23-year-old son who has just been diagnosed with a brain tumor.  Biopsy results are pending.  What is still uncertain is whether this is sure to kill him or whether it can be overcome.  He is having symptoms from the tumor and something must be done.  What a nightmare.

What mixed feelings it brings out in me.  I am so, so sorry this is happening to him and to his mother, my colleague.  It is unbelievable how fast their lives have been upended, tumbled, with a new reality of IV tubes, head bandages, and uncertainty.  This is a horror I can imagine, but I do not want to force myself down that path.

I am so glad it isn’t happening to me and my child.  I can retreat into the fact that for now, for this moment, mine are safe, happy, productive.  All is well in my life.

But in her life……prayers and food and presence are as good as it gets right now.  Uncertainty while waiting for biopsy results.  What does this mean?  What does she do about work?  What about his financial obligations?  What can she do right now when he is so tired, but so anxious, and in pain.  What will tomorrow bring?  Next month?  Next year?

I am planning a meet-up with our adult children at spring break.  A few days together in Moab, hiking, biking, camping together.  I hope everyone makes it there and home safely.  I look forward to the laughter and stories and adventure.

Holding Cathi and her son in my prayers and thoughts.  Contributing where I can.  Offering help and presence.  Standing by in case of need.  A willingness to continue with her and him however long and hopeless it gets.

And a renewing realization that all go through grief and difficulty.  Now is not my time for a very sick child.  Perhaps it never will be.  But my moments of fear and uncertainty ebb and flow also.  Life beats us up sometimes.

Taking care of Mom

I’ve been absent from my fledgling blog for a few weeks now.  You might think it was the holidays.  Actually, I was overwhelmed with caring for my mother.

My mother lived with us from March of this year until New Year’s Eve.  Ten months.  She is independent in that she is still capable of caring for herself, showering, getting simple meals.  She was even still driving.  My husband and I could go to work and she was mostly fine being left for long periods of time.  She would walk with her little dog, feed the birds, watch tv.  She was only supposed to drive to the grocery store near our home, but she would forget that, or else she would decide that rule was unnecessary and she would make her way to the pet store to buy treats for her dog, or birdseed.  The last three times she went to the pet store she got lost and drove around for several hours before finding her way home.

If you haven’t had a family member with memory problems live with you I’m not sure you can fully understand the stresses.  My husband and I found we couldn’t talk openly in front of her.  Saying a simple thing like, “It was a rough day” prompted inappropriate inquiries and coddling from Mom.

Repeating the same thing over and over because she can’t remember that she just asked that question was easy compared to when she would obsess about something with the need to have it explained again and again.

Perhaps one of the most difficult things was walking the line between allowing her all the freedom she deserves as an older adult and limiting that freedom to keep her and others safe.  Case in point: allowing her to continue driving to the nearby grocery store.  The drive is about a mile and a half and all rural with only one turn.  Her driving skills seemed to be intact, albeit her reaction times are slowed.  We felt it was an acceptable risk for the time being.  Others questioned our judgement.  Had she hurt someone else in an accident we obviously would have been wrong.  Perhaps we were allowing too much freedom.  She was getting lost.  This was a constant burden, a constant question.  Now?  Is now the time to take the keys?  When will it be time?  How will you know it is time?

My husband and I transitioned very easily into an empty nest.  We love to have the kids come home, but it is okay when they go back to their homes and their lives.  Having Mom in our home was like having an adolescent around again, but more difficult.  She wasn’t gaining her independence she was slowly losing it month by month.  Our business wasn’t her business, but she thought it was.  Our subtle humor was lost on her as she loses her capacity for subtle humor, provoking misunderstandings that she just couldn’t figure out.  Her frustrations turned into little cutting jibes directed at me.

I don’t think you can understand if you haven’t had your mother, who is losing her mind, live with you.  I was slowly losing me, raging, teeth grinding.

In December we were able to finally make the finances work for Mom to go to a very nice assisted living apartment.  My husband moved her in on December 31st.  She loves it.  She can have her little dog there.  She likes the food.  She likes the people and the activities.  She can walk to a grocery store.  I met her there yesterday afternoon for wine and cheese and a country band.  I enjoyed her instead of tolerating her.

We have our home back.  We can talk openly about our day.  We can have the silence when we want it.  Everybody present understands the humor.


I know from visiting a lot of hospice patients in their own homes that there are people out there who can take care of their mother in their own homes for years.  Some of them almost seem to thrive on it.  I believe there are caregivers who can care for their own family member for years and be alright.  I am not one of them.  Probably most of us are not really able to do it without suffering emotional and physical effects.  Thank goodness for assisted living and adult family home facilities where our loved ones can be cared for appropriately and daughters can be just daughters.

A Good Death


The patient was a woman with a loving husband and adult son.  She was unconscious on the sofa.  Her husband and son were in uncharted territory.  They didn’t know if she would “come out of it” or if this was the end.  It had happened so quickly.  A week ago she went to the doctor.  She’d needed a wheelchair at the doctor’s office, and it was difficult to get her back into the house.  Four days ago she’d stopped eating.  She just wouldn’t take anything they’d offered.  Yesterday she lay down for a nap on the sofa.  At bedtime she was very sleepy and she didn’t want to move to bed so she had slept on the sofa.  This morning she wouldn’t wake up.  “Thank God you’re here” they said.

She was peaceful.  They didn’t think she was having any pain and I didn’t think so either.  Her face appeared calm, without lines or grimacing.  Her breathing was quiet, with some periods where she wasn’t breathing for several seconds.  We sat down in the chairs around her and talked about hospice services and what they needed at this time.  We decided a hospital bed would be a good idea, and a wheelchair, in case she did waken.  Maybe a bedside commode.  I ordered those things for delivery that afternoon.  They were surprised I could get them a wheelchair so quickly.  They had been waiting for a custom wheelchair for three weeks already.

We talked about the signs of approaching death and what to do about them.  They agreed that she wanted to be kept comfortable at home.  We talked about how long she might have and what other things they could expect in the hours and days to come.  I made sure they knew that they could reach a hospice nurse 24 hours a day, and that they should call when she passed.

They decided they could get her into the hospital bed by themselves, otherwise I would have arranged to have someone at the home to help with that after the bed was in place.  I told them about the medications I would have delivered that afternoon in case she started showing signs of pain or respiratory distress.

I could feel their breathing calm down, their concerns relax.  They called me an angel.  They didn’t know there was anyone out there who could help them so quickly, and with just what they needed for today.  I assured them I was not an angel, but it felt so good to be able to bring them exactly what they didn’t even know they needed within a few hours of their call.

So many times in healthcare, nurses cannot adequately address what the patient and their family need right at the moment when they need it.  Hospice bridges that gap.  It is designed to be able to respond to whatever the patient needs today.  Sometimes the patient is the family, as in this story.  Our patient was doing just fine on her journey.  Her husband and son were the ones who needed equipment and education and reassurance.  And I felt like an angel for being able to bring it to them.

Who pays for hospice?


Do you know that hospice services can usually save you money out of your pocket?  And time spent going to the doctor’s office and then to the pharmacy.  Who pays for hospice, anyway?

Most private insurances have a hospice benefit.  Medicare and Medicaid both pay for hospice services.  100%.

The hospice benefit is one of the best things our government ever did for us when, in the 1980s it implemented the Medicare Hospice Benefit.  This benefit saves consumers and taxpayers money on end of life care.  It cuts the cost of dying in America and ensures much better care for the dying and their families.

Insurance companies and Medicaid model their hospice benefits after Medicare’s benefit.  Most private insurance pays for hospice services 100%, although some have limits on what they will provide for a lifetime.

The hospice benefit requires a multidisciplinary team approach to end of life care.  In response to the dying person’s needs, the team will include a nurse, social worker, chaplain, medical director, bath aide and volunteer.  All of these people serve the patient and their family in whatever place they call home.  People in a nursing home, assisted living, their own home, and even in the hospital can have hospice services.  Some hospices also have a hospice house which is usually a small unit or stand alone building where several patients are cared for.

In addition to the team, the benefit also includes any medical equipment needed.  Things like oxygen or a hospital bed or a wheelchair are provided.

Medication related to the end-stage illness is also provided under the hospice benefit, and frequently the hospice will provide delivery to the patient’s home.

This is a simple synopsis of who pays for hospice and what the benefit provides.  In real life situations, there are other benefits specific to what our patient needs at any given time.  Please feel free to ask questions.

Who is eligible for hospice services?


Who is eligible for hospice?

A person of any age with any life limiting illness who is not seeking life prolonging treatment and whose doctor feels they have a prognosis of less than six months is eligible for hospice services.

That is a lot to take in at once so let’s break it down.

Hospice takes care of patients of all ages from birth to very old age.  Sadly, babies are sometimes born with debilities that limit their lives from days to months.  Children have illnesses or injuries which are life limiting.  Cancer, heart disease and lung disease don’t just affect adults.  Young families cope with these illnesses as well as injuries such as near drowning, falls, burns, and car accidents.  Hospice cares for these children and their families as well.  If you want to know which hospice addresses these needs the best, call your nearest hospital pediatric department.

Life prolonging treatment frequently means treatment for cancer; chemo therapy and radiation therapy, but also parenteral nutrition (nutrition through an IV) for those who cannot eat and dialysis for kidney failure.  However, different hospices will allow different life prolonging treatments under some circumstances.  Usually these circumstances are looked at carefully by the hospice with the goal of doing what is best for the patient and their family, but which the hospice can also afford to provide.

Not pursuing life prolonging treatment is also an indicator of a person and their doctor having come to the juncture where they have decided together that continuing treatment is futile and will cause further harm to the patient without benefit.  Some people think of this as “giving up” the fight but really, it is being realistic about the future and changing the focus from life preservation to optimizing what time is left.  It is a change in expectation and attitude and treatment plan.  Some people come to hospice, having turned this corner.  Others haven’t come to accept the inevitability of death and may gain this acceptance with the help of hospice.

To have hospice a doctor’s order is required, and a part of the doctor’s order is a statement that the doctor feels his or her patient has a life expectancy of six months or less.  Doctors know a lot and sometimes they can even accurately predict when a person is going to die, but it is definitely an inexact guess.  Sometimes, it is framed as, “Doctor, would you be surprised if this person was alive in six months?”  Even though it is an informed guess it is required for a person to have hospice services.

Although the average length of time a person will have hospice services will be under two months, and sometimes only days, some people do live on hospice for longer than six months.  Sometimes even two or three years.  As long as the person continues to appear to the doctor and the hospice that he or she will not live for another six months, it is permissible for the hospice to still be involved with this person.

This is who is eligible for hospice services.

Say it out loud

IMG_4978 It is not unusual for the dying person and their loved ones to be afraid to talk about dying.  Experienced hospice clinicians model for the patient and their family how to talk about it.  Frequently the dying and those close to them don’t want to hurt each other.  I will hear, “I don’t know if he knows he is dying.  He never talks about it.”  Or, “She is working so hard to take care of me.  I don’t want to burden her by talking about my death.”

In groups for terminally ill people, there is usually relief for the dying person in being able to talk about their own death and dying process.  They refrain from speaking of it to their family because they want to protect them.  But in the group, they finally feel the freedom to discuss their own death.

Seemingly, everyone needs to contemplate the end, but are so guarded against hurting each other that they sometimes miss out on this special connection.  An open conversation between a dying person and their most loved, closest family members can create an experience of intimacy that comforts like nothing else.  Talking openly takes the fear and power out of the previously forbidden conversation.  Expose it to the light.  Instead of being fearful, the open conversation removes the secrets and the tension of avoiding the truth.

The hospice nurse or social worker says it out loud.  “Death.”  “Dying.”  “When you die.”  The patient and their family are all there in the room.  Everyone heard it.  Nobody panicked.  Look, we can talk about it out loud and it hurts a bit, but, it also feels kind of good.  I might be crying because I’m scared, but I can still control myself.  Perhaps my husband and I can try talking about it more openly.

Intimacy is surely the best gift at end of life.  Everything may be going to hell, but as long as we have our words and our love for each other, we can talk about it, express our fears and our love.  If you know someone who is dying, practice saying the words out loud.  Then take the plunge.  Talk about your love and your fears and how you feel about that person dying.  Now, how do you feel?