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.

What to Ask When Looking for a Quality Hospice
by Barbara Karnes, R.N. | June 27, 2016

Dear Barbara, What does really good hospice care look like?

There have been many changes since Hospice care began in the 1970s. The Medicare Hospice benefit brought regulated care to the 1980s and those regulations have continued to evolve and become more comprehensive over the years.

Hospice has gone from being a volunteer based philosophy of end of life home support to being a recognizable part of the health care industry with reimbursements and profits.

Because we don’t really think about end of life care until we or someone close to us needs it we enter into relationships with hospice that may not be satisfactory or meet our expectations. Not satisfactory because we don’t really know what hospice care is. Most of us just know it is care when death is approaching.

So--before we can see what good care looks like we need to examine the meaning of the term hospice and what care is provided. On the National Hospice and Palliative Care Organization web site we get a definition of Hospice. “What is Hospice? When medical care cannot offer a cure hospice provides care, comfort and support for persons with life-limiting conditions as well as their families. The Hospice Team works to make the person comfortable and relieve their symptoms and pain for the entire length of their illness.”

The following is taken directly from (Centers For Medicare and Medicaid Services and outlines what care is provided:
“According to Title 18, Section 1861 (dd) of the Social Security Act, the term “hospice care” means the following items and services provided to a terminally ill individual by, or by others under arrangements made by, a hospice program under a written plan (for providing such care to such individual) established and periodically reviewed by the individual's attending physician and by the medical director (and by the interdisciplinary group described in paragraph (2)(B)) of the program—
-    (A) nursing care provided by or under the supervision of a registered professional nurse,
-    (B) physical or occupational therapy, or speech-language pathology services,
-    (C) medical social services under the direction of a physician,
-    (D) (i) services of a home health aide who has successfully completed a training program approved by the Secretary and
           (ii) homemaker services

-    (E) medical supplies (including drugs and biologicals) and the use of medical appliances, while under such a plan,
-    (F) physicians' services,
-    (G) short-term inpatient care (including both respite care and procedures necessary for pain control and acute and chronic symptom management) in an inpatient facility meeting such conditions as the Secretary  determines to be appropriate to provide such care, but such respite care may be provided only on an intermittent, nonroutine, and occasional basis and may not be provided consecutively over longer than five days,
-    (H) counseling (including dietary counseling) with respect to care of the terminally ill individual and adjustment to his death, and
-    (I) any other item or service which is specified in the plan and for which payment may otherwise be made under this title.
The care and services described in subparagraphs (A) and (D) may be provided on a 24-hour, continuous basis only during periods of crisis (meeting criteria established by the Secretary) and only as necessary to maintain the terminally ill individual at home.
Now to answer the original question of “what does good hospice care look like?” I created this list of questions for families to use to help  identify a “good” hospice.

1. Do you have primary care nursing? Will we have the same nurse, home health aide, social worker, and chaplain for each hospice visit?
     * You want the consistency and comfort of knowing the same person. 

     * This is becoming harder to achieve because fewer and fewer  hospices are providing primary nursing.

2. Are the Inpatient services (hospital or Hospice House) offered only for symptom and pain management?  Can you stay under private pay when the Medicare time limit for inpatient runs out?
   * If you cannot do private pay and the stay in a facility is only for symptom and pain management it means the hospital or Hospice House stay is only for five days, NOT until death occurs.
   * This is an area of confusion. It is an important question to answer so  that 5 or so days after admission to a Hospice House or hospital you aren’t suddenly having to decide to move a loved one to a nursing facility or home.

3. How often and how long are regular home or nursing facility visits?
     * How often?
       * Once a week should be the minimum if life expectancy is months.
       * Two to three times a week if life expectancy is weeks
       * Every day or even twice a day if death is expected within days. 
     * How long are the visits?
     * In the home ?

       * Forty-five minutes to ninety minutes is an average.
       * A few visits may be shorter, a few may be longer
       * You don’t want ten to fifteen minute visits. That’s not hospice!
 * In a nursing facility

     * It depends if the family is present and how responsive the patient is.
     * If no family is present and the patient responsive, thirty to forty-five minutes

4. Do you come to the house when death occurs in the home?
     * It is a comfort to have the hospice nurse come to the house when  death occurs.
     * The guidance and support as well as the assistance with the funeral  home is important.

5.  How often do the Social Worker and Chaplain visit after the initial visit?
      * It may be only once unless you ask for them to return.
      * If you want them, how often do they visit?

6.  Don’t be concerned about what you won’t need.
      * A lot of services offered just don’t matter.
      * Social Work and Chaplain services can help guide you through this  experience,

           * Use their offerings.
           * Know that Chaplains are not based on religious denominations. 

           * Their focus is spiritual comfort no matter a person’s belief or non belief.

7.  Be careful of hospice if dementia is the only cause of approaching death.
     * Dementia is too unpredictable, unless not eating is the issue and a  feeding tube is not the chosen option.
     * You may be discharged from the program in a few months because  the decline of dementia is so unpredictable.

8.  Will hospice make an initial visit to begin services on a weekend or after 5 PM during the week?
     * Time is our enemy.
     * Disease progression doesn’t just occur during the nine to five work  day.

Questions 1 and 8 are hard to compromise on but may still be difficult to find.
Questions 3 through 7 are just good basic information.
You may not find every question answered the way you want it answered, but you will know more thoroughly what kind of service you will be receiving. Call several hospices with your questions to narrow your choices.

As I said earlier there have been many changes in hospice care since it began. Some for the better, some not so much. What I am suggesting as  representing a “good” hospice is becoming harder to find. My hope is that by setting the standard high, and having families ask for that level of care, all hospices will rise to the quality expected.

Something More about Finding a Quality Hospice...

When supporting a person who is facing the end of their life, it helps to have as many tools as possible at your fingertips.  I encourage you to pick up my End of Life Series of booklets.  The goal of the series is to neutralize some of the fear that an unpredictable future can bring.

Photo Credit:  David Flam

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.



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