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.


Does "No Code" mean "No Care"?
by Barbara Karnes, R.N. | August 24, 2016

Dear Barbara, would you address the belief among so many people that a “no code” means “no care”.

There is a general lack of information about almost anything medical. We don’t deal with medical issues until we need them and then instead of researching or even asking questions we tend to accept our physician’s recommendations. With this lack of involvement  and knowledge in our care we also bring our misconceptions. Misconceptions and lack of knowledge about end of life abound. What a “No Code” means and what it involves is one of the areas a lot of people don’t really understand. It is also a term most professional healthcare workers ASSUME people understand.

First, lets define “No Code”. The simplest explanation I found was Googled from the Free Dictionary http://medical-dictionary.thefreedictionary.com/no+code
“a note written in the patient record and signed by a qualified, usually senior or attending physician instructing the staff of the institution not to attempt to resuscitate a particular patient in the event of cardiac or respiratory failure. This instruction is usually given only when a patient is so gravely ill that death is imminent and inevitable. Also used is DNR ("do not resuscitate)."

With our medical advancements we are now at a place where we can basically keep a physical body breathing for an undetermined amount of time. Notice I wrote “breathing” instead of alive. We can pee for people, keep their blood pressure up enough to circulate, although poorly, our blood through the body, keep the heart pumping and the lungs expanding. What we can’t do is give people a life beyond breathing, life of “alive” interactions, smiling, responding, thinking, exchanging.

When a person is in a  situation that the medical professionals (physician) determine they can not be fixed, that they will die from their disease, that at some point the person’s body will stop functioning normally and only machines and severe medical interventions will sustain breathing, it is often asked if the person wants to be a “No Code” and sign a DNR form. As stated above that means when the person stops breathing and their heart stops the medical professionals will NOT try to start the heart or use a machine to keep the person breathing. They will NOT use a lot of medications to keep the body functioning. 

What most people don’t realize is that by NOT choosing a “No Code” or NOT signing a DNR form there is no guarantee (it is not even implied) that the person who died (coding tries to bring the person back) will be returning to a normal functioning life or that whatever they died from will be changed, let alone cured.

Does a no code mean no care? Definitely not. It means a different kind of care. Care that is directed toward comfort. Care that involves less medications and interventions that prolong being trapped in a nonworking body. Care that places emphasis on allowing death to occur naturally following the body’s timetable, Care that is not using extensive medical interventions with its incurred suffering to prolong the inevitable. Care that is focused on keeping you comfortable until you die.  Pain medicines, positioning, skin and mouth care, and family support becomes the focus.

In this age of such advanced technology we tend to forget that everyone dies. We are born, we experience, and then we die. That is life. We have made amazing medical advances.  We can prolong breathing but with it generally comes suffering  and of course we will still eventually die.

Does choosing to be a “full code” (have everything medically possible done to keep you alive) buy more time? Maybe. But what kind of time is the question? Generally not very good, interactive time. Being a no code, signing the Do Not Resuscitate form does provide the assurity of a more comfortable, natural death. Remember dying is not painful, disease causes pain. The normal natural way we die from disease or old age is we gradually withdraw, our sleeping increases and we eat less and less. When it comes time that we actually stop breathing we are asleep and non responsive.

There are questions to ask your physician when asked if you want to be “Coded”, you want to be resuscitated if your heart stops,  or you want to sign a DNR (Do Not Resuscitate) form, to be a “No Code”. These are also the questions to ask if your loved one is in a medial situation and you are being asked to make these decisions because the person, themselves, did not, and now cannot, address these issues.

What are my chances of returning to a “normal” life following my heart stopping and requiring the medical intervention to restart it?
Will the medical condition that stopped my heart and made me die be different (improved or declined) after you have restarted my heart?
Ask for a description of what a “code” involves. What will be done to my body?
If I choose to be a No Code, to have a DNR order in my medical file, what will happen to me from now until I die? What kind of care will I receive? How will this decision affect my relationship with you, my doctor?

Something more about Does "No Code" mean "No Care"?

Since I am often asked how to find an Advance Directive, I've decided to provide one of the many links to download an advance directive in your area.  Do it.  Today.  And breathe easier knowing it's done.  https://www.medicare.gov/manage-your-health/advance-directives/advance-d...

 

Unnecessary Suffering and Indignity
by Barbara Karnes, R.N. | August 9, 2016

Dear Barbara: I heard your Art of Manliness podcast. It was very
enlightening. Thank you. I recently read a NY Times article, and felt it
described “labor” very differently than the peaceful/delusional version you
described. I’m curious of your reaction...
NYTimes: System Failure
http://opinionator.blogs.nytimes.com/2016/02/06/system-failure/

Thank you so much for sending me this article. What was my reaction? I
shared it to my Facebook End of Life and Bereavement group. On it I
wrote: "A good read. Thank you for sharing this with me. How can we make
physicians and the hospitals they work in more sensitive to end of life. This
experience is happening country wide. It is not what most people want, so
why are we letting it happen? I've been advocating for thirty-eight years yet
some days I feel we are going backward instead of forward. Dying is not a
medical event. It is a normal, natural part of living. Why can't we in the
medical arena recognize there is a time to stop and let life come to it's
natural end---the operative word here being natural. I guess this article
definitely touched a nerve in me.”
As you can see I become angry and frustrated when people, through the
ignorance of their families or the medical professionals, have to end their
lives with unnecessary suffering and indignity. What was described in the
article is not how most people want to die. Yet because we all like to
pretend that we are never going to die, Advance Directives are not made
before they are needed. And when they are needed we are generally too
sick to make rational decisions or, sometimes, even to be listened to and
believed.
It is part of how our medical system works that that woman was in the ICU
for four months. I have to ask, why? Knowing what was happening to her
body even a non medical person could see she was not going to be fixed.
She would never be returned to any kind of a normal life. Yet apparently no
one questioned the goal of all the medical "treatments" she was receiving. I
think in most of these situations the goal is simply to keep the person
breathing.
We have the medical capabilities and procedures to keep a person alive
almost indefinitely BUT is it in the best interest of the person to do so? We
have to ask “what is living? “Why are we extending this life?” We should
always remember, “For everything there is a season, --- a time to be born,
and a time to die.”
This woman suffered until she was dead---needlessly. She received most of
her medical treatments because they were available to be done. Just
because we can do various medical procedures (dialysis, liver transplants,
even ventilators) doesn’t mean it is in the best interest of the patient to
have them done.

Something more about Unnecessary Suffering and Indignity...
Brett McKay interviewed me for his podcast, The Art of Manliness. He
focused on my book, The Final Act of Living. I give specific details on
making an advance directive so that the suffering and indignities
experienced by so many won’t happen to you. 

Reaching for the Far Side of Grief
by Barbara Karnes, R.N. | July 26, 2016

Dear Barbara, How does a person transition from caregiving after my loved one's death to restoring my balance, focusing on the new role for my life.

Grief is not about the person who has died. Most religions of the world teach that being dead we are in a better place. Grief is about us and how we react and feel about our life with someone we care about not in it any more. Part of grief is figuring out how to rebuild our life now that a huge part of it is missing. Loss has forced us to change.

Grieving, as so much of living, is hard work. Finding new activities, new direction, new routine, and new focus while your heart is still crying is one of life’s major challenges.

Really, each person finds their own way. There are as many ways of figuring out how to go on living as there are grievers. For those that were a full time caregiver through an illness that ended in death there are additional hurtles.

When we have devoted any length of time to caring for a person that requires a great deal of our time and energy and then that purpose in our life is gone we often flounder. We had developed a routine to our daily life and now there is none. What to do to fill the day, how to find, let alone create, a new routine are questions confronting us.

We are generally very tired, physically and emotionally, by the time our caregiving is over. Our thinking processes are not what we are used to. We are tired, weepy, aimless, not our usual selves. We are way out of balance.

Be gentle with yourself. Don’t have expectations of how you SHOULD be, what you SHOULD be feeling and doing. There will be functioning days, there will be nonfunctioning, cry days,  and I think I’m doing better days. Cry days will gradually lessen (but not on any time frame other than your own).

For a while you will not feel like visiting, being with people. People will come to you but it is hard for you to reach out. Eventually you will begin to want to be with others again--a  visit, a movie, a lunch.

Eventually you will begin to think about how you are going to fill your days now that they are not filled with caregiving --a job, volunteering, a trip. Think about what you would like to do now that you can. Maybe now it is time to get yourself in shape with better eating habits and exercise.

Think about what makes you happy, what relaxes you, what brings you fulfillment and joy. As you rebuild your life (and that is your task now) fill it with activities and direction that has meaning for you. This is literally a starting over point. As you leave the deep emotional pain of grief and enter the “what am I going to do with my life” part you have the unique opportunity to embrace life in a different way.

We tend to focus on the pain of grieving, it’s emotional lows. I am offering another side, the far side of grief, as an opportunity to direct the life you have with the life you want. Let the way you figure out how to go on living be the testament to the love and loss that you are experiencing.

Something more about Reaching for the Far Side of Grief...

Often in my Facebook Group, End of Life Care and Bereavement, members will reach out when grieving. The Griever will be met with tremendous support.  I invite you to join us.  It's a warm place.

Dying Without Faith?
by Barbara Karnes, R.N. | July 11, 2016

Barbara,  How is dying different for those who have no faith...and how do we support them while respecting their position?

This question can be expanded to also ask:  “How do we support others who believe differently than we do?”

I am going to assume “no faith” means not believing in a God or an afterlife, believing that life as we know it just ends. I don’t think dying is any different for those with “no faith” than it is for those “with faith”. We die the way we have lived and there are few death bed conversions. Facing the end of our life does make us look at life and its meanings, but we do tend to examine our beliefs from our personal perspective. We look at our life and how we have lived it from the vantage of the belief system we have developed. As we approach death we do not begin to change what we have lived so hard to believe.

We tend to think a person with no belief in an afterlife or God will be more frightened as death approaches than someone who believes life continues, just in a different way. I do not find that to be true. Fear is present for all of us as we approach death. Not because of our belief system but because we are facing the unknown. We are all afraid as we approach death, no matter our beliefs, no matter how hard we try to deny that fear.

I have found that some people return to religious beliefs abandoned earlier in life. Catholics go to confession, others counsel with a minister or a rabbi, but most of us hold to the belief or non belief we have accepted or developed throughout our life.

Now, how do we support a person while respecting their position? Supporting a person does not mean or even imply that we share our personal beliefs with them. Supporting a person does not mean talking about life after death or talking about God. Supporting a person means being a presence, being a listener (not a talker), not having answers, but having compassion.

Faith or lack of faith is not an end of life issue. It is a personal, living choice. As caregivers we must remember we are privileged to be part of this person’s, and in many cases this family’s, experience. We are there to support, educate, nurture, and guide. We are not there to change.

Something more about Dying Without Faith?...

In my books The Eleventh Hour and The Final Act of Living, I write about how it is inappropriate to share our spiritual ideas with patients.  We are there only to support, not to confront or question.

 

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 CMS.gov (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

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Blessings!