Hospice Care/death/dying


Hi ms. Johnson, my grandma past away a few weeks ago. I haven't been able to be me since her death. She was critically ill. She asked me to let her go naturally by asking her doctors to remove her feeding tube and register her as DNR/dni. A hospice doctor was assigned to her care as her new primary care doctor. Hours after they stopped her feeding and oxygen and turned off the monitor, I saw her fidget as she was breathing much more slowly. Then, she died. Since then, I can't stop but think I killed her because what if her doctors intubated her or performed CPR? What if the nurses intervene and reinsert her feeding tube? She might have lived. Honestly, I have been feeling so guilty and ashamed of myself for a few weeks now. Every time her caller id shows up, I thought it might have been her on the other line. Unfortunately it's my uncle calling. I'm just so hurt and angry. I yell and ignored everyone even strangers. I really don't know what to do. I cry myself to sleep every night.

Dear Chris:

If I could put my arms around you and give you a hug, I would.  You certainly need one!  Or ten!

I am so sorry for the loss of your grandma, but I want to remind you that you did a difficult and brave thing by doing exactly as she asked you to do.  She had care--good care, it sounds like--right up to the end.  She went peacefully, calmly, without pain and without anxiety.  You did not kill her!  Neither did the hospice doctor or hospice nurses!  She died because her body could no longer support her soul and it was time to end life here and begin the next one, wherever and whatever that may be.  (I have my own thoughts about that but I try not to put that out there as fact--)

The fidgeting was just little muscles twitching.  She may have been thinking of something that had her fingers or arms moving.  Some people see or hear people they love who have already died, and it is possible the fidgeting had to do with that.

I do believe that your grandma knew you were there and was grateful.  You did what she asked--not everyone would be that loving.  So many of us would think only of ourselves.  We want our loved one to be with us to the last possible minute or second.  We forget that that is not necessarily the desire of the dying person--I would go so far as to say I believe that as we die, we are looking forward and kind of resent being held back.

Removing her feeding tube did not end her life.  I would be surprised if they turned off her oxygen, unless she was not dependent upon it.  As for turning off the monitor, there is little that is more annoying than the constant beep beep beep, or the alarm going off when a heart rhythm is not regular--and if you are trying to make that last trip, trying to move to the next part of life which is after this life that you and I know about, can you imagine how annoying that might be?!  So it's a good thing the monitor was off too--it doesn't do anything but monitor--whether it is on or not doesn't support life or encourage it.  It just makes noise.

Being intubated is painful--most people who are intubated do not have the procedure performed unless they are unconscious or under sedation or anesthesia.  CPR breaks ribs, which is some of the worst pain there is--and the pain is repeated with every breath.  You spared her all of that and for a very good reason, an even better one than that she asked you to.  You spared her that because there was no point.  She was so ill and she was elderly--what is the best thing that could have happened if you had not been her voice and helped her get what she asked for?  She would not have been cured!  Even if she was aware, that awareness would have been pretty awful.

You are going to miss your grandma for a long time.  Even after you feel better, you are going to hear a joke or see a beautiful picture, or watch a TV show, and you will think, I need to call her, or tell her about that, or show that to her.  For a long time, you'll reach for the phone before you realize she won't be the one who answers.  This is grief.

It is also grief to yell at or ignore people!  It is grief to make bad decisions, or decisions you might not make otherwise.  It will seem as though you are doing things that are not "you," and you will be right.  (So don't make any serious decisions for a while, okay?)

Ask your uncle to have the listing on your grandma's phone changed to his name so that you do not have that tug.  That will help a little bit.  Another thing that will help is for you to cry every time you feel like it.  When you don't feel like crying, I want you to pick a time each day and push yourself to cry.  It will seem silly, but trust me and do it anyway.  If you feel odd about crying where someone might hear you, cry in the shower.  Or in your car (but not while you are driving!).

Talk about your grandma with people who knew here.  Remember silly and happy things about her, and when you feel like crying then, do it!  Talk to her (you don't know that she cannot hear you!  she might!).  Tell her how much you miss her!  Thank her when something happens that pleases you--maybe she is having an effect on some little things around you!  We do not know whether our loved ones get to stay around a while, and there are those who believe they do.  What I know for a fact is, if you think about, talk about and talk to you grandma, you will not get over your grief any faster (you didn't think I was going to say that, did you?).  But it will hurt less, and it will hurt less faster.

The last thing I would suggest is that you consider finding someone to talk to who is a professional counselor or therapist, if you still hurt this bad after a few weeks.  Some pain is normal--the only way you don't hurt when someone dies is if you didn't love them and you don't miss them.  So much of what you are feeling and thinking is totally normal.  But sometimes it feels pretty bad a lot longer than it should, and that's when you need to find someone to talk to who has some experience with helping people through grief.  You might also check on a group for people who have had someone they love die--churches and hospitals often have groups for family members of people who have died, or they know someone who does.  Those groups are usually free.  You'll get more than advice and suggestions, you'll get proof that you aren't the only one who feels that way.

As you listen to others who are grieving, and you reach out to comfort them, you too will feel comforted.  I believe death is just a temporary separation, and we will see the ones we love again, when it is our turn.  Meantime, you have some life of your own left to live!  From what you have written, I can tell you are a wonderful person, someone your grandma was (and is) proud of.  When the pain eases up, you will again be happy, and I believe you will find yourself helping others who feel as you do.

Take care, Chris, and know that you did exactly the right thing, and you were brave and unselfish to follow through with the decision your grandma asked you to make.  It will get better.  It just takes time.

God Bless You--

Hospice Care

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Christine Johnson


I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.


I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

HPNA (Hospice and Palliative Nurses Association)

none yet

Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

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Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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