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.

VSED ~Voluntary Stopping Eating & Drinking
by Barbara Karnes, R.N. | April 24, 2017

Dear Barbara, Would you talk about voluntarily stopping eating and drinking (VSED)?    

Here is a definition of VSED from Comfort Care Choices website:
“What is VSED (Voluntary Stopping Eating & Drinking)?  This refers to the decision by a patient to stop eating food and drinking liquids when they have a terminal or life-limiting disease, so that their death can be hastened (and therefore their dying will not be prolonged).”

From the Death With Dignity website I got this information:
“You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status. At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.”

The Death With Dignity article seems to me to be  accurate regarding the dying process.

What do I  personally think? If we want to die, VSED is a way of having total control. It is not illegal.  It doesn’t involve others (which is illegal). It is basically easy, not needing any equipment,  and leaves no mess. That said, I don’t think it’s a decision that should be made impulsively, in a moment of action, or when depressed. It is something that requires thought and commitment. It is one thing to not eat or drink for a couple of days, it is another to continue to not eat or drink when discomfort sets in.

Some articles  that I used as a reference elaborates on how painful the process becomes and seems to stress being a “purist” in the respect of not even moistening the lips.  Why? The idea here is a person has chosen to end their life--for whatever reason. There is no right or wrong, no rigid protocol to follow. I believe supportive care would be to keep the person as comfortable as possible and if that means moistening lips so be it. Actually I would recommend sucking on occasional ice chips or frozen grapes and using glycerin swabs to address the mouth discomfort. There is not enough moisture or nourishment in either to significantly alter the intended purpose of death. As long as the person is alert enough to control their swallowing that little bit may bring some comfort. Also medication to induce sleep as a comfort measure is very appropriate although I believe increased sleep will come of its own accord. In this situation sleep is very much your friend and I think it will increase naturally as the body begins shutting down.

Dying a gradual death from disease or old age naturally involves reduced eating and drinking. It just naturally happens. The body is shutting down due to the advancing disease process.

In the natural dying process, from disease or old age, people also gradually increase sleep, and withdrawal from their surroundings. With dehydration from disease induced or dehydration by choice the calcium in the blood stream increases and when it gets high enough sleep occurs and in that sleep death comes. That is how death from dehydration occurs whether chosen or happening naturally. I can’t help but think the dying process  of VSED is similar to the natural dying from disease or old age.

This is an involved topic as well as emotionally charged. We bring to this discussion our relationships, our spiritual beliefs, and our sense of right and wrong. My perspective is most of us look at hastening our death because we are more concerned and frightened about dying than of being dead. If I have an illness and am told I am going to die soon, then lets skip the  long drawn out “dying part”. If I am just old with no disease process, just finished living, then I suggest we first look for depression, for why this person is finished with living. Have a dialog, explore the reasoning. Maybe changes can be made. All that done, I think it would take a very strong personality to choose to die by not eating and drinking.

Something more about VSED...

VSED is discussed among the members of my FaceBook group, End of Life Care and Bereavement along with feeding tubes and hydration IV's. It's a place where articles are shared and great conversation happens.  Join us!

Distancing From The Dying
by Barbara Karnes, R.N. | April 10, 2017

Dear Barbara, there's a phenomenon I see every so often when I'm doing hospice care. A close family member, a spouse, parent, or child, will totally back away from the dying process, sometimes to the extreme of not being with the patient at all. Then, when it's all over, they totally fall apart. The situation becomes all about their grief and loss. How would you deal with this?

There are so many reasons for this kind of behavior and each individual situation requires a different approach. I think fear keeps some family and significant others from being with their  person as the end of life approaches. They are afraid of what dying and death will look like so they stay away. Here we can help by teaching about the dying process, offering support and guidance. Our function with most of our families is to neutralize the fear around dying and death that they bring to the bedside. Yet sometimes no matter how supportive and instructive we are, we do not reach the individual.

There is no perfect relationship. There are good times and difficult times.  Sometimes the difficulty we have with the person that is dying keeps us from being at the bedside. We are uncomfortable, angry, hurt, and often unforgiving. We find it easier to avoid, rather than confront, whatever has come between us, so we stay away. Then, when death comes, the guilt we carry because of those unresolved issues compounds our grief.

I have noticed that what seems like disproportionate grief is often the manifestation of a troubled relationship. Following the death we sublimate all the difficulties and elevate the person to “sainthood”. With that elevation, we tend to verbalize how wonderful this person was and what a huge loss it is for us now that they are gone.

How can we help them? By gently reminding them no one is perfect, no one is all good, always agreeable, always meets our needs. Help them understand it is okay to be upset with someone who is dead. Also suggest that they write a letter to the person that died. Put in writing everything they would like to say or have said and didn’t, positive and negative. There is something very powerful in writing, the funneling of our thoughts to paper. Then --  burn the paper. Watch all the feelings that were put on paper, all the tears shed, the anger told, disappear into smoke and ashes. Release so you can move forward.

Something more about Distancing From the Dying~

As I always say, Knowledge Reduces Fear.  If, perhaps, we could have the "distancer" read Gone From My Sight or watch NEW RULES for End of Life Care, their fear would be reduced and they could be a part of their loved ones dying process.  It would be so much healthier than distancing and regreting.

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 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!


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