The True Value of End of Life Support

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 disease 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, whether it be that of someone they care about or their own. Throughout 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 present.

Funeral industry, hospice, palliative care and End of Life Doulas are the few service providers that dare approach the subject of mortality. Funeral out of necessity; hospice, palliative care and End of Life Doulas out of the community's need for more support and information.

Many agencies, home health providers, churches, as well as physicians are reluctant to recommend services that address end of life issues. It is sad and confusing why anyone would not give their friends, clients, or customers the guidance and comfort that trained 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 end of life support. It is perfectly acceptable to ask a physician for a palliative care or hospice referral. If the signs are there, get the referral and let the palliative care team or hospice professional determine if the services are appropriate.

Three things I look for to tell me if it is time for end of life care 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 than 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 a lot of guidance and support to help—— 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. 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.

Funeral home personnel are in the unique position of working with people when they are open to discussing end of life issues. When pre arrangements are being made, the opportunity to neutralize some of the fear that living with approaching death presents is available. Just making arrangements and not discussing what this experience brings a missed opportunity to receive help.

For funeral homes I am planting this seed: bringing up the help hospice can provide and handing out written literature about the dying process when funeral arrangements are being made (whether the need is eminent or in the far off future) gives people additional tools to face and cope with one of the most challenging experiences life offers.

Something More About...  The True Value of End of Life Support

I encourage every palliative care and hospice agency to provide their patients and families with the End of Life Guideline Series to reduce the fear that comes with a life limiting illness.  End of life doulas will be supported in their work by using these tools also.  If funeral homes offered GONE FROM MY SIGHT: The Dying Experience when arrangements are being made and MY FRIEND, I CARE: The Grief Experience after the death, families would be grateful and greatly helped.

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Ann Grimes

Dear Barbara,
I have given out ‘Gone From My Sight’ many, many times over the years. It has helped so many families through the most difficult times. Our hospice in South Carolina refers to it as ‘the blue book’ and when I worked in Pennsylvania our hospice there also referred to it as ‘the blue book’. We chart it our notes that families received the blue book and no further explanation is needed because everyone in this field knows what the blue book is. You are a blessing!
Thanks so much for all you do.
BK Books replied:
Hi Ann, “the blue book”, little did I know what an impact it would have when I first wrote it. Thank you for your comments. Have you tried reading it with the caregiver? It is a great conversation starter and teaching opportunity; then chart the results. Medicare loves it. Blessings to you in the work you are doing. Barbara


Great idea for funeral homes to offer those two books to clients!
BK Books replied:
Hi Shelley, from our lips to their ears. Funeral Home visits are the perfect place to give knowledge and comfort as end of life approaches. Give the visitors something to take home with them to read in the comfort of their homes. Blessings! Barbara


Yet another insightful article. If we would only open up to the end of life discussion as a society, we could feel better prepared and hopefully calmer when the time comes for ourselves or our loved ones. I discuss end of life with caregivers, and I always recommend your blog and website. I also emphasize the role and value of palliative care and hospice. It was a blessing for my mom and I.
BK Books replied:
Hi Janis, knowledge reduces fear in regards to end of life. It gives us information as to what is normal. It shows us it is not like in the movies. Blessings to you in the help you are giving others. Barbara

Cindy Feyereisen

Barbara, I am grateful to have found you on Julie Ryan’s and Dr Karen Wyatt’s podcasts during my mother’s recent transition. Plus, I‘ve had your book “Gone From My Sight” over 20 years. I was my mother’s doula the last 3 years of her life, especially when she started hospice last July. Her journey was “textbook” as she passed within 6 months. She was a retired RN and she lived to a blessed 96. I am happy knowing we covered all the bases and our family could love and release her with open hearts. Thank you for your service to humanity.
BK Books replied:
Hi Cindy, I pleased my words and booklet helped guide you during your mother’s end of life experience. Blessings! Barbara

Lolita Silicani

Dear Barbara,

Thank you for your continued postings.
I liked your three things to look for in telling if our loved one is near death.
This one gave us a ‘gentle’ reminder that we all have to go and dying is inevitable.
BK Books replied:
Hi Lolita, thank you for your positive comment. Blessings! Barbara

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