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.


Faith and the Dying Process
by Barbara Karnes, R.N. | March 20, 2017

Dear Barbara, How has faith entered into the dying process?

What does “faith” mean? I am going to say, for the sake of this blog, that faith means religion and the various dogmas it teaches. Although “faith” could mean “a spiritual belief”.

It seems a lot of us want faith to be part of the dying process. Our idea, and maybe our wish, is once we approach the end of our life  we will believe that God exists, that we are accountable, that we will go to a good place and this will make our dying easier, maybe even less scary.

I’m just not sure if that really happens. Yes, for some it may but for most of us I think we approach the end of life with whatever beliefs we have gathered throughout our life. I don’t see people reaching death and suddenly changing their ideology. If they had “faith” they may find comfort in its teachings. If they did not they may find comfort elsewhere. It does not mean faith always comforts and not having faith brings discomfort.

Going beyond religion and God/Spirituality I do believe on many levels (conscious and unconscious) we question our life, our relationships, our purpose. A “what have I done, who have I touched” review. In that evaluation we may look at our spiritual beliefs. It is just that most of us don’t change those beliefs. Some of us do return to the religion we have been lax in attending and practicing.

One of the key aspects of approaching death I almost always see regardless of an individual's belief system is fear. We are all going to be afraid to some degree as we approach death (degree being the operative word here). That fear often gets confused with our belief systems. Some who, in their healthier days, rejoiced in the idea of being with God, become fearful as death approaches and think it relates to their belief in God. I suggest that that fear has nothing to do with God but relates to the humanness of facing the unknown.

Religions that teach heaven and hell affect us as we approach the end of life. If we believe we have not lived up to our religion’s expectations of entry into heaven we may be hesitant to let go of this life (We have limited control over the time that we die. See Gone From My Sight).

If prayers brought us comfort in living then they will bring us comfort in dying. If we did not relate to praying in living then we will not necessarily relate now. We die the way we have lived. We don’t change who we are just because death is near.

All of the above is why it is so important for us as healthcare providers to keep our beliefs to ourselves. We are at the bedside to support,  and guide, bring comfort, not to bring change. It is all about the patient/family and nothing to do with what we believe.

Something More about Faith and the Dying Process......

In my book, The Final Act of Living, Reflections of a Longtime Hospice Nurse, I have a chapter on Spirituality.  This may be a helpful resource.

A Chemical Straight Jacket, Dementia at End of Life
by Barbara Karnes, R.N. | March 6, 2017

Dear Barbara, Will you talk about a chemical straight jacket at end of life? My mother is a dementia patient in a memory unit. Hospice now. They are giving increased Ativan & morphine to "keep her comfortable". We are in very last
days now. I don't want her to suffer, but somehow this seems wrong.

I have not heard the words “chemical straight jacket” before but I see the implication---controlling patient movements with drugs rather than physical restraints. Nursing facility regulations are very strict now about physically restraining agitated patients. Medication regulations aren't as strict if you can justify the reason.

I do not think there is a need for narcotics just because death is approaching. Dying is not painful. Disease causes pain. Dementia does not cause pain unless the person is actively hurting themselves or there is another physical condition that causes pain.

Part of the natural dying process is restlessness. There is a picking of the clothes and bed linen. There is an agitation of just not being settled, tossing, and turning. If that restlessness is not causing harm or putting the patient at physical risk then I do not feel medications are necessary. If the restlessness puts the patient in harms way (falling out of bed, injuring themselves) then Ativan or some relaxant seems appropriate.

Increased use of narcotics and relaxants as end of life approaches has become quite common in the end of life area---much to my concern. Why is this happening? One: end of life has become more medicalized, more intertwined with the medical system. We seem to have forgotten that dying is not a medical event. It is a social, communal event. (Another whole blog article) Two: I think there is a lack of understanding of the dying process. What is natural versus what is pathological (even among medical professionals). With this lack of understanding is the deep desire to keep a person comfortable. To help them approach death in as comfortable a way as possible. Not ending life but providing comfort until death comes. I think this is admirable but based in lack of knowledge. Our end of life professionals need to know this.

When working with end of life what we need to remember is to treat pain when present with as much medication as necessary to keep a person comfortable. And we continue giving that medication until the person’s last breath.

When a person is in the labor of dying and pain is not a part of the disease process, we do not need to begin a pain management protocol just because the person is dying.

Something more...

I have a new resource that would be perfect for this situation.  It's called HOW DO I KNOW YOU? Dementia at the End of Life.  It is specifically written to help families understand their loved one's process in the final months before death.  NEW RULES for End of Life Care is my DVD kit that has a whole section on narcotics at end of life.  So helpful for families during the final challenging weeks.

EOL RN Being Yelled At ~ How to Support
by Barbara Karnes, R.N. | February 20, 2017

Dear Barbara, how to support an RN who gets yelled at by families and MDs at this precious time of life...it is a constant battle. The hospice MDs are more stressed than ever.

The word “constant” concerns me because that implies it is happening a lot. Are you referring to yourself or physicians and families in general yelling at RN’s? If it is just yelling at you then I suggest you look at your people skills. Most families are stressed, tempers can flare, nerves are frayed. It is up to us as professionals to use our communication skills to ease the tensions. The next step is to not take the family tensions personally. Do your job of educating, supporting, and guiding then leave the tensions where they originated and move on to the next family.

Physicians are a different challenge. In the hierarchy of the health care professions it is the physician that has the power, makes the referrals, writes the prescriptions, calls the shots. SO, again using our communication and people skills is a huge part of our job.

There is a thin line being walked with end of life care when it comes to a good number of referring physicians. Instinctively they have a hard time releasing treatments. I used to tell my nurses if you don’t want something from the attending physician don’t call them with just an update. They will think they have to do something. It is just their nature. I know that is an exaggeration so I will qualify it and say not all physicians are in this category but you get my point. Physicians are often going against their own beliefs by referring to hospice. They are uncomfortable, and that internal conflict is often directed at the hospice employee. Or they could just be an unpleasant, irritable person (they are everywhere, not just in health care).

What do you as an employee do? If it is a big outburst and in your eyes inappropriate and unacceptable tell your supervisor. Ask that they speak to the physician about the appropriateness of the interaction. If it continues ask that you do not work with the particular physician’s patients.

Again, do not take the conflict personally. Look at your part of the disruption. Learn what you can from the interaction and then let it go. 
We of all people know the precariousness of living. We see daily how quickly our time on this planet is over. Time is too precious to let negative interactions with others affect how we enjoy each day.

Something more about Getting Yelled At:

There is a special kind of pressure that the EOL nurse feels- helping the patient have a "good death", caring for families who are under duress, and doctors who may feel failure that their patient is in hospice.  But you, the caregiver need care too!  Caregiver burnout happens when we only care for others.  I wrote a new book and made a dvd to address this issue.  It's called Care For The Caregiver.  I hope that you take advantage of this resource!

Laboring To Leave ~ Difficult Breathing at End of Life
by Barbara Karnes, R.N. | February 6, 2017

Dear Barbara, I would like to know why the breathing pattern is different at
end of life. My Mother had fast and labored respirations. She did have
COPD, but my Dad had the same breathing pattern and he did not die from
COPD. This was very disturbing to me. Are they suffering when breathing
like that?

The irregular, difficult breathing that occurs at end of life frightens most
people. As we watch we feel something bad is happening. Our loved one is
hurting, struggling, suffering, and of course this is disturbing to us.
In the hours to minutes, sometimes even days, before death, a person’s
breathing changes. First it becomes fast, often with congestion, and then
gradually the breaths becomes slower and slower. As breathing slows (ten
times, or even six times, a minute) the person actually breaths like a fish,
with their mouth opening and closing. This can be frightening if you don’t
know that it’s normal.
The congestion that occurs before death will depend upon how hydrated or
dehydrated a person is. The more fluids in their body, the more congestion.
Sometimes changing their position (laying them on their side) will help to
redistribute the fluid, and the breathing will sound quieter. Suctioning the
fluid generally does not eliminate it. The bottom line is that congestion and
difficult breathing are a part of the normal dying process.
Is the person suffering? I think not, although it appears that they are. By the
time they are hours from death their awareness of what is going on around
them and of their body has diminished. What I envision is the little chick
working hard to get out of its shell. In the hours before death from disease
our body is shutting down. It is laboring to release itself from this planet. It
is a struggle, just as the chick is struggling, but I don’t think either the
person or the chick are suffering.

Something more about Laboring to Leave:

Difficult breathing during the natural dying process is only one of the many changes that we will witness when a person is dying. It's comforting to know what to expect during that process.  Gone From My Sight (The Little Blue Book) is a "road map" of what will occur during the dying process.  The Eleventh Hour is the companion book and is more specific about the changes in the last days, hours, minutes, seconds and just after death.  These two books, along with your nursing staff, will provide knowledge so that you can better support the one who is laboring to leave.

Worker Bees, Watchers & Talkers~ Which Kind of Caregivers Are You?
by Barbara Karnes, R.N. | January 23, 2017

Dear Barbara,  There seem to be family caregivers who feel that everything falls on them when they have other family members, siblings, etc that could help.  Burnout of the main caregiver happens and then everyone is frustrated that the caregiver isn't continuing to do more.  Sometimes the caregiver gets short and verbally abusive after being the main caregiver and other family members are mad about it...

Sounds to me like you need a break. Within the family structure we have worker bees, players, watchers, talkers, all kinds of roles that get developed somewhere along the family path. We then perform the roles that are expected of us.

That is the dynamic that I think is happening here. As a worker bee myself I know it is very hard to ask for help. “I‘ll do it” is me. I may be tired, even irritable, but will keep going. I keep doing a task I have taken on (and I tend to take on lots of tasks) because that is who I am, or that is who I think I am, the role I play in the family.

Sometimes when we think that others think we are not doing enough, it may actually be us thinking that the others are not doing enough. When the worker bee caregiver is not getting enough help from other family members, often it is because others have not been asked to help. It can be hard for us to ask for help. We may want help but just don’t know how to ask for it---so we don’t ask and then feel put upon and over whelmed. It becomes a difficult situation of our own making. We don’t seem to know how to set limits for ourselves. The thing is if we don’t start asking for what we want and need, if we don’t stop doing more than we comfortably can, we will reach a point where we CAN’T continue.

Irritability can easily come with feeling overwhelmed, over worked and unappreciated.  What can we do about all this? Ask for what we need. Show our vulnerability, practice saying no and setting limits for ourselves with others and with tasks. Have a family meeting and ask for the help needed. Try not to to point fingers but just honestly and directly tell those who can help that you are feeling alone in this heavy responsibly of caregiving, that you need their support and assistance. As a family, make schedules of who can do what during this meeting.

All of the above sounds so organized and reasonable BUT we are dealing with personalities, families and all of our dysfunction (We are all dysfunctional, it is the name of this life game we play). Asking for what you want may not bring you anything. What then? You can aways just walk away, leaving a mess, but it will force others to do something. (Really hard for us worker bees to do).

Something more about Which Knd of Caregiver You Are...

I suggest that nurses, caregivers and family members read A Final Act of Living, and particularly focus on the self care portion. 

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Blessings!