Something to Think About: a blog on end of life

Barbara's blog

For the last 30 years all of my patients have died. I will be sharing observations and ideas that I have gathered from working with people in their final months of life.

You may not agree with what I am saying. I don't pretend that what I've figured out about living and dying is "capital 'T' truth" or that it is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.

Have We Lost the Essence of Hospice?
by Barbara Karnes, R.N. | June 14, 2016

Barbara, There is much in today’s media about the negative aspects of hospice care. Is not-for-profit better than for-profit? What about quality of care issues?  It is very sad to see hospices turned more and more into corporate business models with less and less care for, and response to, patient needs. Far more is focused on corporate bottom lines. Please comment.

Over the years I think Hospice service has changed from its original intent. When hospice started, choosing it was for the patient and family, almost like walking away from the medical establishment. They returned home to live the best a person could until they died. No blood draws, no lab values, few procedures, but a lot of education, support, guidance, and presence.

Today’s hospice is much more medically oriented. It has more protocols, more policies, more regulations, more money.

The not-for-profit vs. for-profit argument has waged since for-profits entered the hospice arena.  What people don't seem to understand is that the care is not about the legal classification of the agency (they all make a profit). It is about the philosophy of the individual hospice and how that philosophy is dictated by the administrative principles of management. It starts at the top. You can have an office full of caring, dedicated staff but it is the leaders who set the tone.

The end of life avocation that hospice originally presented is becoming a gift of the past. Now it is a business with high censuses, detailed and often confusing regulations, and marketing staff and strategies separate from clinical staff.

There are more and more inpatient facilities being created but only to serve for symptom control, because that is where the reimbursement lies. Most end of life symptoms can be managed at home but not everyone has a caregiver in the home as death approaches. We need inpatient facilities that provide care during the last weeks/days of life, but at present there is no reimbursement for just dying in a facility.

Maybe the recent negative attention hospice has gotten in the Washington Post and other media sources will bring about change. More regulatory action is not necessarily the answer for those changes. Enforcing the process that is already in place rather than adding to regulations. In fact, eliminating some of the micromanaging regulations while continuing to monitor quality of care and compliance would work very well. Unfortunately, this is not what appears to be happening.

Dying is not a medical event. It is a social, communal event. I would like to see less focus on the medical aspects of dying and more support in home care.  Sending someone from hospice to the home (clergy, social worker, an RN or LPN) who is trained to support and guide the family through the last moments of dying. Not for medical intervention but to support the family in the normal, natural dying process.  They would provide care and support through the death until the funeral home arrives. You can call this person a doula as that is the role they would be filling. At present there is no reimbursement for that kind of service. I would like to see inpatient facilities reimbursed through the death, not just for symptom management. Most symptom management can be done at home anyway.

What I really think will happen (and is happening to a small degree) is that other options to end of life care will emerge but not under the name of Hospice. I am seeing residential care facilities that only care for the dying springing up around the country. I see end of life doulas who can be hired to support and guide the family.

How we die doesn’t and won’t change. Physiologically our bodies will die the same way they always have. How we interpret and how we see that dying, and what we do and how we react to that process, can and will change.

There are many individuals who are trying to provide the original hospice philosophy of support, guidance, teaching, and knowledgeable end of life care in hospices throughout this country. Unfortunately they are frustrated by the current medical, regulatory, and corporate systems that impact their ability to provide the care they want to give.

Something more about "...the Essence of Hospice"...

Chaplains, Social Workers and Nurses have been using my dvd set, NEW RULES For End of Life Care to educate their staff about how caring for someone at the end of their life is different than caring for someone who is going to get better.  Dying is not a medical event, it's a social, communal event.  There is a pdf that can be downloaded and printed at the end of the dvd which covers all that is discussed in the film.

photo credit:  Vinoth Chandar


Hospice- The Initial Visit
by Barbara Karnes, R.N. | June 6, 2016

Dear Barbara, I recently had a meeting with a family that was referred to hospice from a facility.  They had about 10 family members at the meeting. The topic of a DNR order came up and as I discussed the issue with them it became apparent to me that the family members were not clear on the reason for the hospice referral and that the patient did not express his wishes about end of life care.  Do you have any suggestions for dealing with a large group of family members and how to discuss the matter of Advance Directives when a patient has not made his wishes known. The patient was clearly appropriate for hospice services due to significant weight loss, poor appetite, and increasing debility and withdrawal.

A huge part of hospice and palliative care is addressing the lack of knowledge that is among most people in our country. We believe “other people” die and that the medical establishment is supposed to fix everyone. Added to those beliefs the fact that most physicians are focused on cure not end of life and you have a situation where accurate information has not been given. As end of life care providers we certainly have our job cut out for us.

It should be expected that most of our initial visit will center around the following areas: educating the family of the reason hospice is the appropriate form of care for their loved one, addressing briefly the signs of approaching death (decreased eating, increased sleep, and withdrawal) and then discussing where the family sees their person on that continuum.

Addressing Advance Directives and Do Not Recessitate status is another area of discussion. With Advanced Directives and DNRs expect a lot of people do not have a clue what you are talking about. Teach them.

Another important part of the initial meeting, after all the above explaining has been done, is to ask the family (and patient if the referral is early enough to include the patient) how they think hospice can help them? What would they like and need from hospice services?  With this question and the resulting answer you enter into the relationship with clear expectations of either hospice or the family.

With all of the above areas discussed, hopefully the family will see the appropriateness of the hospice referral and the signing of papers can begin. You have helped them think about the end of life, discussed decisions and addressed what hospice can do for them. From this initial visit you will have laid the groundwork for the rest of the patient and family’s relationship with end of life and hospice services.

Something More About The Initial Visit...

THE FINAL ACT OF LIVING is a reference book for anyone dealing with end of life.  It reads like a novel yet has the information of a text book.  Universities use this book as well as chaplains, social workers, nurses, families, counselors...  It has a chapter on Advance Directives and DNR's. 

"I Don't Want To Talk About It"
by Barbara Karnes, R.N. | May 31, 2016

 Dear Barbara,  When my doctor brother received his diagnosis of inoperable cancer he told us he did not want to talk about his illness, just life. This is so difficult for all of us. Could you write about why people close up and about what to do?

We die according to our personality. We deal with our approaching death in the same way we have handled other challenges in our life. Our personality doesn’t change it becomes stronger, more defined in the ways we have addressed living. Think about your brother's personality and the manner in which he has lived his life. See if his reaction to his life threatening illness is the way he dealt with his other challenges. His response seems very dogmatic, almost a form of denial, also unemotional. It certainly is a way of keeping people distant.

For some people they just don’t want to be constantly reminded of their frailties. They don’t want people to tell them what to do to get better (when most don’t know what they are talking about anyway) and they don’t want to hear how good they look (when they know they don’t). Often illness and how “we are” becomes the only topic of conversation. Your brother may be wanting to avoid that from happening.

What to do? I guess you have two choices. Honor his wishes and play the game of not talking about this life challenge or have a conversation with him as sibling to sibling. Tell him your feelings and your need to have an open talk with him. Tell him how other family members are reacting. Ask if he can help all of you deal with his life situation. If he didn’t know his life was ending and there was a family occurrence would everyone ignore it or would they come together to support each other? 

We often think  because a person is facing the end of their life we have to do whatever they want us to, regardless of how it affects us. We treat them as we treat a very spoiled child--do what they want so no one is uncomfortable all the while everyone is uncomfortable.  I think it is perfectly acceptable to have an open, honest talk with your brother about his approaching end of life. Have the conversation and then come to a compromise so that both of you (and the rest of the family) can find a comfort zone that satisfies everyone.

Something more about "I don't want to talk about it"...

Fear is powerful.  Perhaps reading A TIME TO LIVE, Living With A Life-Threatening Illness, your brother could gather some tools to help him with his gift of time.  He would better understand what was happening and reduce his fear.

Grieving for Grandma
by Barbara Karnes, R.N. | May 23, 2016

Barbara, My husband's 94 year-old grandma just passed.  Our family has lived with her for all of my daughter's life.  We are strong in faith but I was wondering if there are more of your books available for the grieving process or others you would recommend as I have a child grieving as well.

Children and their grieving process is affected by their age and their maturity level.  We all grieve, no matter our age, but our understanding of this normal life experience varies with age.  My Friend, I Care, my grief booklet, addresses the normal grieving process and is written simply.  I'd say anyone, adult or child, with a reading level of 4th grade will benefit from it's information.

I have two children's coloring books, ( I am Standing Upon the Seashore and The Tree of Life ) which explain dying and death through poems, each with an analogy.

Jim Boulden has age specific booklets for children.  You can find them on Amazon.

Something More about Grieving for Grandma...

In New Rules for End of Life Care, I talk about how families used to live in multigenerational houses.  The circle of life was played out in a normal, natural way. There are births and their are deaths.  It pleases me that your daughter has had the good fortune to live in a multigenerational home.


Tired of Fighting
by Barbara Karnes, R.N. | May 18, 2016

Barbara, I have a 23 year old daughter that has a chronic illness. She says she is tired of fighting. I don't want to lose her. I am lost.

Having our children hurt and struggling in life can be devastating for us parents. There is such a helpless and even hopeless feeling in watching our adult children with their challenges. When they were little we could kiss the hurt and make it better--- now what do we do? Kisses aren't enough.

As a parent of adult children, I have found that one of the hardest parts of our relationship is to support them in their choices when I would have chosen something different for them. I have learned the hard way that I can offer ideas but then must be quiet and let them make their own choices. They, and I, have to live with the consequences of those choices. Oh so tough for a parent to do. When it comes to life threatening situations we can still only offer our ideas, support, and love.

My suggestion is to keep her talking. Talk about how hard it is to live while being sick. Help her find joy in each day (even if the joy is so small she can barely find it). Help her avoid being isolated from others (too much time alone leads to dwelling on how hard life is, instead of finding good in the day that you have).

For you, find a friend to share your feelings with, one who will listen to you as you share your fears and frustrations. In helping your daughter find joy, you will also find it.

Remember LIFE is a terminal illness. We are, all of us, dying each day. It is what we DO with each individual day that has the value, not how many days we accumulate on this planet. I talk about how, in the parent's handbook, there is a rule that parents must die before their children. When that rule is threatened or gets broken the loss or idea of loss is incomprehensible. 

Something more about tired of fighting...

I want to invite you over to my facebook group, End of Life Care and Bereavement.  The group is filled with like-minded people who, if you want to share about your challenge, will respond with care and support.  



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