Something to Think About.
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 have figured out about living and dying is true or is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.
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.
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
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.
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.
I'm an older nursing student who is starting a new position as a NA2 in a
lovely hospice facility. I've never experienced death from a clinical
standpoint. I have a concern. We, as hospice caregivers, will surely
become emotionally attached at different levels to our patients. How in the
world do we handle repeated losses of our patients from an emotional
standpoint. I know we will shed tears with each one, but what is the best
strategy to keep one’s emotions in check and be a beacon of strength for
the dying patient and then for the family after the passing?
This is such a powerful question. How you address it will affect how long
you remain working in hospice and end of life.
What stands out is your statement, “I know we will shed tears with each
one.” Actually, not necessarily. In fact if you cry with every death you will not
be able to sustain your balance. There definitely will be times when a
situation, family, or patient touches you on a deep level and you will cry. An
example: I walked into a room with a college boy and his girlfriend sitting on
a hospital bed listening to music. Before I could even be introduced I burst
into tears and had to leave the room. As his mother was standing with me
in the hall I told her I had a college son the same age and I saw and felt
what it would be like to have him in that bed. We talked and actually
became friends when all was over. The point I am making is that something
touched me on a personal level. If that depth was present with every
patient and family we would not be able to continue the work.
Death is not really a part of most professional caregiver’s job descriptions.
It IS for those of us who work with end of life. Most of the patient/families
we care for, we care for as people who need assistance but to whom we
are not personally attached. We guide them, support them, care for them,
but not on a personal level. We care for them on a professional level that
includes kindness, compassion, empathy as well as medical and end of life
education. This is our job and we can do it well without getting emotionally
We have to acknowledge that we are swimming against the current of
mainstream medicine. Death for those who work in end of life is not failure
or the enemy. It is the ending of the work we do. Our satisfaction in the
death of a patient is that we have helped create a sacred experience and
memory. A memory that will influence a meaningful and balanced grief
process. With our patient’s death we want to say to ourselves “job well
done”. No tears are necessary.
There will be times when something happens in the course of your work
that will shock you to your core. I remember a patient killing herself in a
horrific manner and having to contact our hospice psychologist to debrief.
There will be situations that you must retell, debrief, and share with
someone who can listen (not offer words, there won’t be any), but allow you
to unload so that you can move forward to the next patient.
It is being able to share with those who know the challenges of our work
that will keep us healthy and able to continue. It is not a sign of weakness
to share. It is a part of our responsibility to ourselves. On Friday nights after
work, a group of nurses from my office would meet at a local establishment
for beverages and conversation. There was a companionship of likeminded
and like-challenged people unwinding. It showed each of us we
were not unusual in having what ever feelings we were having, that we were normal, that we were not alone.
Something More about Tears on the Job...
It is a particular calling for those of us working with end of life. Perhaps more challenging than other kinds of caregiving. With the high number of turn over with end of life caregivers, I thought that our community needed support in how to take care of ourselves. From that vision has come my new DVD, Care for the Caregiver which will launch in February. There will be more information on my FB Group Page, End of Life Care and Bereavement in the coming days.
Barbara, My mother is in final stages (or is she?). Has not had food or drop of water in 16 days. She is in a coma state and receives morphine several times a day. Her only illness is dementia. I guess my question is how much longer can she survive?
Friend, I don't have an email address to write you back, so I am putting my response on the Blog in hopes that you will read it. Your question is so time sensitive this is the only way I could think to respond quickly.
Many factors will affect the time in which your mother dies. Her body size is the key factor, the heavier she is the longer it will take. Also I am wondering if the morphine is being given with IV fluids. If so then she is being hydrated and that can extend her life as well as contribute to increased congestion. If she has no other disease process I wonder why she is receiving any morphine at all. Dying is not painful, disease causes pain and dementia is generally not physically painful.
If she has had no water of any kind for 16 days I would expect her to die at anytime--maybe before I write this.
I do not have enough information to be specific as to the unfolding of your mother’s dying process. I do know that dementia is not a disease in itself. It is a symptom of many different diseases. If there is no disease process other than dementia then her body is shutting down because of the lack of food and water. I know that sounds harsh but if she is in a coma (I am wondering what caused the coma?) then by not intervening with artificial feeding and hydrating you are allowing death to arrive in its natural, normal way.
Remember there is a huge difference between just breathing and actually living. I alway ask “Would you like to be attached to machines and just breathing with no other cognitive functioning?” Most of us would not. It is not wrong or a “sin” to refuse medical intervention when quality of living will not be an expected outcome.
In these last days with your mother talk to her as though she can hear and understand you. Tell her what she has meant to you. Tell her of your love. Use this special time to say goodbye.
Something more about "16 Days Without Food or Water"...
The use of narcotics with end-of-life pacients is confusing. I clear up much of that confusion on my DVD, NEW RULES for End of Life Care.
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