Something to Think About: a blog on end of life
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.
QUESTION: A large tumor was surgically removed and I immediately went into chemotherapy. I get very frustrated when people consistently say "you look great today" but I’m not really looking good and I'm so tired of explaining the symptoms I'm going through. Lots of people don't understand. How do I explain what I go through without too much wording.
People can be so thoughtless in their well meaning efforts. In sickness and in grief we often just don’t realize the distressing effect our words can have. In most cases the less we say the more comfort we can give. Being a good listener is a talent and a valuable gift to give to others. There is an old, very old, book called PET, Parent Effectiveness Training that I still recommend when I am addressing counseling skills.
Now to answer your question of how do you respond to these inquiries? Answer honestly and with as little drama and length as possible. “Thank you for inquiring. I am doing well” and move on to another topic. If you are not doing well, or feeling particularly well when asked you do not owe anyone an explanation. “It has been a challenging journey that I really don’t want to talk about.” is a short, honest reply.
Somewhere along the line of learning conversation skills a lot of us got the idea that we have to answer questions put to us even when we don’t want too. That it is impolite to not explain ourselves and/or give out information asked by others. Actually that is a misnomer. We do not have to give others explanations, information, details, reasons, or even apologies and excuses simply because they ask. We can be polite and courteous without giving information that we are uncomfortable giving.
Family and people you have a close relationship with call for a slightly different approach. Their concern may be more than friendly curiosity and social exchange. It will probably be genuine concern. With family I would start by telling them what you have told me. How hard it is for you to hear how good you look or having to explain in detail what you are experiencing. Be open and honest. Then, explain to them how you want them to interact with you.
Feeling ill is exhausting. Taking care of other people's feelings during illness is just to much for anyone. Take a look at A TIME TO LIVE, Living with a Life Threatening Illness. It will have many ideas for your self care during this challenging time.
Question: How much is comprehended by the patient as they approach end of life? Do they know who is present, if someone is absent? How does the patient feel knowing that the loved one's spirit is present?
In the hours to minutes before death most people are non-responsive. They do not respond to touch or being talked to. They may be moving about in their bed but they are unaware of what is occurring around them. I do believe, as do many others, that the person can hear. I also believe the person can perceive, on an inner level, what is happening.
I’m going out on a limb here but consider this: we are more than our physical bodies. There is a “driver” to this earthly vehicle we call a body. The driver is not bound to the physical so the driver can perceive what is happening when the body does not. The driver knows who is in the room, who is not. The driver hears all that is being said. The driver understands more of the dynamics of relationships and physical living than the personality that has operated the body.
Now let’s add that the person dying knows that they are dying. For months they have been processing their life, On many levels they have been processing what their life has meant and trying to make sense of it. Now they know there is a very short time left.
Over months they have withdrawn from earthly, every day interests. They have gone inward, disconnected from everyday concerns. Now in the hours before death they are like the little chicken working to get out of it’s shell.
Because this is the time of inwardly processing relationships I suggest that family and significant others present at the bedside spend some alone time with the patient. Even though it appears the patient cannot hear or is unaware, talk to them. Tell them what is in your heart. Talk about the good times and also talk about the challenging times. Remember they are processing their life (who did they touch, what did they do). You can help them put the pieces of their life together.
I’m not sure what the last question, “How does the patient feel knowing that the loved one's spirit is present?” means. I am interpreting it to ask how does the dying person feel seeing loved ones who have already died there with them? First, I have no doubt that those who have died before us come to help us get from this world to the next (another blog article). From the experiences of patient’s telling me about seeing the departed I have gathered that seeing them is a pleasant experience. They are pleased and happy to see them.
I had a person once say to me “You make dying sound so easy and pleasant but I have been on the battlefield. It was not easy or pleasant.”
I can’t imagine a place more frightening than the battlefield, fear must abound everywhere. It is fear that blocks serenity. Imagine the sun as being the peace that comes with finally being free of a cumbersome physical body, of realizing you are more than physical, that you continue in a different way. But there are clouds between you and the sun. Clouds totally blocking out the warmth of the sun. Clouds are the fear we bring to our dying experience. The amount of clouds, of fear, determines how gentle our letting go will be. We die according to our personality. Some of us will go gently, others will fight to the last breath.
Look at the trailer for my DVD Kit, NEW RULES FOR END OF LIFE CARE, and see if it is something you, your family, your fellow nurses... could use. I talk more fully about how the moments before death will look. Sometimes reading is difficult when a loved one is dying and learning is easier in a film format.
I wrote this post as a follow up to last week's post, The Final Hours Before Death.
To: End of life doulas, in-home caregivers, hospice nurses, social workers and chaplains, to No One Dies Alone volunteers who work with families in their home, funeral home employees who transport the body to the funeral home and to the good samaritan who is just helping a friend, I offer these thoughts:
Death is an emotional, scary, hopeless time. People who are directly affected and present at the moment of death are in shock as well as hit with the reality of “They were right, my loved one is going to die”. Even if death is predicted and expected we don’t really believe the prediction. Other people die, not our loved ones. Now standing in the room with our love dead, the harshness of life becomes all too real.
Words cannot soften the hurt and emotional drain a person is experiencing. Being present as the special person is taken from the home or place of residence means experiencing our last personal, normal contact with that person, our last private moment. The return to the room (if in our home) where death occurs is the first important step in the grieving process. That returning moment, that returning vision, will stay as a memory forever. Then the question is will the memory be healing or wrenching?
Returning to an empty, unmade, soiled bed in an area scattered with used medical supplies and medicine containers, either glaring with light or totally dark, is a harsh reminder of the events that have just taken place. Having to clean the room and then try to return to normal living in that room is a traumatic task. The energy of that room is changed forever. There will always be the presence of the loved one. A sad often-frightening memory has been built.
Now picture returning to the room where the death occurred. The funeral home has taken the body, the room is empty but a low light is burning. The bed, even if it is a hospital bed, is made with a memento on the pillow (flower, picture, poem, Bible or rosary if appropriate to the values of the family, a stuffed animal). The medicines and medical supplies are arranged in a discrete area and tidy. A very subtle memorial has been made, the subconscious is soothed by the sight, and a gentle comforting memory is formed. Now the room has a sad but softened energy. Healing is beginning.
Any of you helpers could easily and quickly cover the bed in a made bed fashion and leave a memento on the pillow. No explanation needs to be said regarding what has been done. Let the understanding and compassion of the action speak for itself the first time someone enters the room.
For the family and significant others of the deceased this simple action has a lasting, comforting effect.
My End of Life Guideline Series of books supports the entire dying process from the time that the patient is told they are unfixable through to the beginning of the grieving process. The patient, caregivers and loved ones are given tools to navigate this challenging time.
I have noticed concern by medical workers as to what to do during the
hours to minutes before death. Here are some ideas to consider.
When the patient is hours to minutes before death they may be
experiencing some or all of the following things. Not responding to the
environment, mottled, breathing irregular, maybe breathing like a fish, slight
agitation, murmuring words but not making sense. Family and significant
others are gathered in anticipation of death occurring soon.
What do we as professionals do to assist the family in having a positive
* Consider yourself a Conductor. Your job is to be as invisible as possible
yet get everyone working together and feeling supported.
* Fear is what most in the room are experiencing. Fear of the unknown,
fear of pain, fear of what they are seeing, fear of what they think will
happen. Reassure family that what is happening is normal and natural. It
is your job to assure them nothing bad is happening, to neutralize the fear
everyone has brought to this experience.
* Knowledge reduces fear. Begin gently explaining what is happening.
“Mom is doing a good job. She is doing what she is supposed to be
doing”. Go over each thing Mom is doing and explain simply what is
happening (don’t use medical terminology, speak at a 5th grade level) and
that it is all normal. “Her breathing is 10 times a minute and her blood
Pressure is 60/40. This tells me her body is slowing down.” “This is how
you die, and she is doing just what she is supposed to be doing’”
* Explain what is going to happen next. “Mom will start breathing like a fish
breaths. Her breaths will get slower and slower until she stops, then she
may take a couple of long spaced out breaths.”
* Encourage the family and significant others to individually talk to the
person who is dying. To spend some quiet time and share their thoughts
and their goodbyes. Reassure the family that the person can hear.
* Tell the family they can lay on the bed, hold their loved one, talk to them,
cry with them.
* Music played softly is often comforting to everyone present. I would pick
music that the patient enjoyed during their life. It doesn't have to be
classical, hymns, or harps.
* This is not a medical event. You are not doing medical interventions
1. The patient’s restlessness is a danger to themselves.
2. Their congestion is excessive and positioning is not effective. Don’t
use suction but you can use a Scopolamine Patch.
(It probably won’t help, but if its causing the family distress you can try.)
3. If pain has been a part of the disease process, then continue giving
pain medication until death. If pain has not been a part of the disease
process then there is no need to give a narcotic just because the person is
approaching death. Dying itself is not painful, disease causes pain.
4. If respirations are severely labored due to the disease process,
then you can use small amounts of morphine. Remember as death
approaches congestion and labored breathing are normal.
* This is a challenging time for medical professionals. We are used to
fixing, to doing something. Now we are not fixing or doing. When I have
taken a person’s blood pressure for the third time and it is 60/40 that tells
me I am nervous and wanting to do something. You don’t need to know
what the blood pressure is once you have taken it the first time. You know
death is approaching and all the tools we were taught to rely on in health
care no longer apply. Education, support, and guidance are the tools we
now bring to the room.
* If labor (those hours before death) becomes long I would encourage the
family to share stories, look at scrapbooks, and reminisce while in the
room. Have a normal, natural family gathering.
* Explain that we have some control over the time that we die. If you are
with someone when they die you are there because they want you there.
If you are not, even while you tried to be, then know you were given a gift
of love and protection.
* Because we can hear and have limited control over the time that we die
we need to gently tell the person who is dying what is going on in the
room. Who is entering, who is leaving. “It is 12:00 and I am going to bed
now. I will be back in the morning. I love you. If you need to leave before I
return I understand.”
When someone is dying a gradual death from disease and is hours to
minutes from death they don't need a doctor, nurse, social worker, or even
a chaplain. They need someone who understands the normal, natural dying
process and can gently guide and support the family to help create a
sacred memory from this very sacred experience.
My book, The Eleventh Hour, details more specifically how to conduct a vigil before someone's death. It is quite helpful not only for the caregivers but the family of the dying as well.
I just read an article on the Independent.com website, http://www.independent.co.uk/life-style/health-and-families/health-news/... and am saddened by the impression that is given. The impression is that water is necessary in the days to hours before death. In reading the entire article you can see a suggestion that guidelines be established for end of life care but they didn't really show us the guidelines.
I was distressed by the headline: ”Dying patients should be offered water in their final hours”. If someone stops there and does not read the article they will come away with a dramatic headline, possibly believe it, and then push fluids on the next encounter they have with a person that is dying--a friend, family member or a patient.
Here is what I have learned from my work with hundreds of people who were dying: always, always offer and give food and water if the dying person expresses an interest in wanting food and/or water. I have also learned that there is absolutely no reason to RESTRICT or WITHHOLD water (which the article implies is happening) unless the person is non-responsive and/or at severe risk of choking due to swallowing issues.
Actually as death comes closer we tend to see that families have a hard time with the fact that the patient does NOT want to eat or drink. Not wanting to eat or drink becomes the issue that causes the most concern not that the patient wants food or water and shouldn’t have it.
In the natural dying process the appetite diminishes as does the want for fluids. The patient in the days to hours before death is generally not responsive and not interacting with the environment they are in (unlike in the movies) and it seems very odd to me that a person at that time is going to say they want a drink of water or even express thirst. I am more inclined to think the watchers of the person dying may express concern from their lack of knowledge about the dying process. We equate food and water with living and as we watch our special person approach death our thoughts turn to nourishment and hydration as a possible way to “fix” them.
The article mentions that “maybe an IV drip" needs to be administered for hydration. Again this is faulty information given by someone who clearly does not understand the natural dying process. Hydrating the person literally creates more discomfort. An IV means needles and restrictive tubing, but it is more than that. The body is shutting down, the kidneys are not working properly so fluid builds up in the lungs and tissues causing congestion and edema. This causes pain and more difficulty breathing. There is less oxygen exchange than if the congestion were not present.
What most people don't know is that in the normal dying process eating and drinking gradually decreases. Over a period of months before death actually occurs the body gradually stops eating. In the week to days before death their fluid intake has decreased drastically and they are eating little to nothing.
Dehydration is part of the natural way a person dies. It is a comfortable way to die. A person just goes to sleep. How does this happen? Dehydration increases calcium in the blood stream and when the calcium reaches a high enough level a person dies. If the body can't be fixed and is itself dying why interfere with this natural process by forcing fluids?
The article, which originated in the UK, mentions that guidelines need to be set in place regarding appropriate end of life care. I certainly agree that guidelines for end of life care can benefit non-hospice (and sometimes even hospice) professionals. I just hope the guidelines are developed by someone who understands the normal, natural dying process and not someone with a strong medical model. The medical model tends to operate from the prospective of "because we can, we should". End of life care is not like caring for someone who is going to get better. Most people don't know this, even medical professionals.
One of the reasons I wrote Gone From My Sight, The Dying Experience, was to educate families and professionals on this subject. "Gone..." gently explains the signs of approaching death and how normal, natural death can happen.
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