WHY NOT HOSPICE? A Reluctance To Refer

There are just two ways to die, fast and gradual. Gradual death has a process to it. If it were happenstance and just happened it would be a fast death. Gradual death occurs either because of old age or disease. With diseases the process begins months before actual death and in old age the process takes years.

Most people have never considered what has been written in the above paragraph. Yet everyone will be faced with the experience of death, someone they care about or their own. Through out most of American society the idea of dying is held in the back recesses of the mind. Only when life forces it upon us do most consider addressing the issues dying and death presents.

Funeral industry, hospice and the newest member Palliative Care are the few service providers that dare approach the subject of mortality. Funeral out of necessity, hospice and palliative care out of the perceived need for more support and information.

Many agencies, home health, churches as well as physicians are reluctant to recommend hospice services. It is sad and confusing why anyone would not give their friends, clients or customers the guidance and comfort that trained hospice professionals can offer. Maybe this reluctance to refer has to do with seeing death as a failure, maybe it is just ignorance as to the true value of hospice. It is perfectly acceptable to ask a physician for a hospice referral.

If the signs are there, get the referral and let a hospice professional determine if Hospice is appropriate. Three things I look for to tell me if it is time for Hospice are: 1. the patient’s condition is deteriorating in spite of the treatment that is being given. 2. You look at the person and say to yourself (and we have all done this but often not wanted to admit it) this person is not going to be here next year at this time. 3. the family and significant others are having difficulty coping with the seriousness of their loved one’s condition.

We generally give people more time then they have. I know it is scary to think of using hospice just as it is scary to make funeral arrangements. It says death will happen soon, but there is such guidance and support to help that at least ask for an information visit.

A hospice referral is a win win. You win if they say it is too soon and you are not appropriate for hospice care or you win by coming onto the hospice program and getting much needed guidance, information and support.

Sometimes patients rally once they are with hospice care. I think it is because hospice is the expert in pain management and comfort care and brings that to the patient and family. Everybody begins to relax a little. You feel less alone, less isolated and have more knowledge about what happens as death approaches.

I know people think of Hospice as caring for those people that are dying but remember we are all dying. Hospice guides and supports people who are in the final act of living.

Something More about WHY NOT HOSPICE, A Reluctance To Refer...

"Dad was showing these signs months ago" is a common response hospices hear from families after reading  GONE FROM MY SIGHT. The information provided in the book regarding signs of approaching death is what physicians need to offer families much sooner than they normally do. 

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Sandra Schneider

I am at a loss right now. My almost 94 year old father has 4 types of cancer and dementia. We were told by 4 doctors that it is time for hospice. His living will which was made 26 years ago, was clear that he wanted no interventions to artificially prolong his life. I am honoring this. The problem are other family members, including my sister who is herself an alcoholic and addict with schizoaffective disorder, and his sister who doesn’t want to let him go, telling him that he can continue to live with constant IV antibiotics, blood transfusions and round-the-clock care. He cannot bear any weight, is bladder and bowel incontinent and is often unaware of who is in the room, who has visited and how many grandkids he has and asks for his mother and grandmother. These family members have made a continuous and relentless effort to convince him that we are killing him by putting him in hospice. He arrived there today screaming that he doesn’t want to be there and asking why he doesn’t get a choice in his life. My sister and aunt have deprived us of the ability to be there with him and him of the ability to accept that death is a part of life. It is a difficult situation, not because he is dying, but because they have fed into his fears instead of facilitating this transition for him. Do you have any advice for us? The fact that my father will die hating me is very hard to accept, but I feel that if I allow them to take over his care it will cause him more suffering in the end.


Hi Sandra, What a mess but not unique. A family in crisis, and a father dying is a crisis, often brings out the worst in us rather than pulling us together as a family. It sounds like you are in a no win situation as far as getting your father and your ideas listened to. Your father, with his age and dementia, will probably register the ideas of whoever speaks to him last (and that sounds like it is your sister). I think this is a “fight” you are not going to win. You may have to tell your sister you want to spend time with your dad but you promise not to address his care issues. You just want to be with him and love him. When you are with him, be calm, soothing, and gentle, that is what you want to convey to him. With dementia it isn’t about being rational, reasonable or logical. It is about being with them in a reassuring loving manner.
I am sorry your last months or weeks with your father are surrounded with family anger.
Blessings! Barbara


Hi Rodna, I received your letter asking for direction for the feelings of guilt you are having about your husband’s dying hours, that you didn’t help him have a death with dignity and at home with his family. In the beginning part of your letter you explained your husband’s behavior, mean, abusive, threatening, and the reason you left him. Just because a person is dying does not mean their personality changes to a better one. Dying only intensifies the personality we’ve always had. From your description of your husbands behavior there would have been no he comes home and dies there happily surrounded by a loving family. If he were to come to your home, which I doubt he would have, he would have brought all the discord and anger with him. It takes two to mend a relationship and from what you have written he was not open to reconciliation.
Now, what can you do to live the life you have been blessed with. First, write your husband a letter. Put everything that has been bottled up inside of you into words, the anger, the guilt, the regrets. Write as much and as long as you need to to get it all out. No one will see this. It is between you and him. Then burn the letter and scatter the ashes along with all the feelings into the wind. Let it go and begin living the best life you can. The past is over, he is gone, you and your daughter have life to live. Make it a good one. Blessings! Barbara


Barbara, plea offer me some soothing comments and ideas. I have found none. 5 years ago my spouse of 16 years died. He was diagnosed terminal and told no one. I guess he was waiting till his disease progressed further. He died unexpectedly from a complication of cirrhosis of the liver 11 months later. We all read the death certificate and we all found out then. I kicked him out of our home due to mood and behavior declines….he was becoming physically aggressive and our 14 yo daughter lived with us. He hated me. He sent me hateful texts all the time. His last one was 2 hours before he became nonresponsive. He was home when he sent it and was in ER when he became nonresponsive. His family chose not to tell me. I found out through the grapevine. I was there 3 days before life support was pulled. I said I was sorry to him, I don’t know if he heard. He went to his grave hating me. He did everything he could in his final months to ruin my life. I feel so guilty for not pressing him to tell me what doctor told him in the hospital. I should’ve been persistent. Please help encourage me. I’m only 50 yo. He was 53yo. I feel like I’m the only one who has had a death like this. I didn’t get to do what I should have done so he could have died with some dignity and spent his last weeks at home with his family. Help.

Shirley Carter

My dad was also on hospice from heart failure,seizures, strokes and dementia, I saw the signs of a slow death but didn’t face it until hospice said he’s slowly passing,hospice did all they could to help me get through this,till this day my pain from my dad’s passing in Feb.of this year is hard for me to cope on my daily activities. Seeing him in pain,not knowing why,but they told me what the pains were.I pray that everyone that has a love one on hospice love them while u can.My dad was on hospice one month and he passed away.

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