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.
Dear Barbara: I just listened to your interview on the Art of Manliness. As I go through life I find it useful to ask others what they have learned in any particular activity or endeavor. With the many contacts you have had with those finishing their time here, I wonder what lessons they may have shared with you? What would they have done differently, what would they tell us?
Actually I am writing a book about those various lessons I have learned from the people I have worked with over the years. So those lessons are in my mind right now.
Here are some thoughts: Most people, I am sorry to say, are so caught up in the process of getting treatment (and generally get very sick in that process) that they don’t feel well enough to have deep thoughts. They certainly don’t want to “jinx” their treatment by thinking about dying and eventual death. I’ve learned we spend so much time trying to stay alive that we stop enjoying the life we have. I see that as a great sadness that a person may not even know they are experiencing.
Families have their fears and concerns. They are more realistic on some level but generally play the game of “this is going to work” and miss their opportunity to do and say those things that are important.
If you asked a person on the day they were dying what they would have done differently I think they would tell you, if they could (and they can’t, it’s not like in the movies), that there should have been less treatment for this life threatening illness. They would say they would have done something they always wanted to do and didn’t instead. I don’t think they would have added another week or even a month to the life they were living with all its debilitation and side effects. Dying seems to come as a surprise. “I did all the treatment, suffered the side effects, gave up my activities, did everything the doctors said and I’m dying? How can that be? I wish I had eaten the dessert that no one said I should have.”
The dying process is such that it is in the months before death that a person is alert and thinking about the might have beens. As death draws closer into the weeks before death the withdrawal process has become almost complete. All thoughts are held within. I believe there is a lot of processing of one’s life occurring, but on the inside. “What have I done? Who have I touched?” Thoughts and considerations. Each person will have thoughts that apply to their individual life but the key word here is individual. We will look back on our own life's direction, accomplishments, and regrets. It seems to be more of an internal processing, an assessment. These are seldom shared.
As I reread this maybe no one is thinking any of these thoughts as they approach death. Maybe the above is what I have perceived and what I would think if it was happening to me. Maybe the most we can know and learn from another’s life choices is not what they say or don’t say but from what registers within us. Something to think about.
Something more about Death Draws Closer...
I wrote A Time To Live when my mother and step father were diagnosed with stage 4 lung cancer within months of each other. A Time To Live is for the person who is faced with a chronic or life threatening diagnosis. It offers suggestions on food, sleep, how to deal with affects of medications... and ideas of how to use this "gift of time" that they have in front of them.
QUESTION to Barbara: I need some help. As of yesterday afternoon I am officially fed up. I have been an RN case manager for seven years. The whole “industry” is making my heart sick for so many reasons. I’m not going to list them because I don’t want to focus on what’s wrong but I want to do something different. I want to teach people not to fear the inevitable. I want to help make death as much a normal part of life as birth. Of course there is sadness. That’s normal. But the sheer frantic panic that I see in loved ones week to week doesn’t have to happen. How can I do that on a broader scale? How can I reach people and help them learn that death is OK and that it’s not such a terrible thing?
I understand and share your frustration. Hospice, palliative care, and healthcare in general has become more about regulations, reimbursement, and policies and less about people, lives, quality, and personhood. People like us are becoming frustrated and ready to walk away rather than fight the system. SO---what do we do to make a difference?
First, we have to stay in the system. If all of us that see the bigger picture leave, then what will be left is the deteriorating, inadequate system. Change is occurring, not for the better, and if those who understand what hospice can be leave, there is no chance to slow that change. How do we stay and effect change? Use our voice, gently and with tact (we're not making enemies but changing patterns). Plant seeds of thought, how things can be done differently, added too, deleted, and restructured. Bring our knowledge, patience, and compassion to all we meet (professionals, patients, and families).
How can we stay and maintain our balance (and sanity)? Band together with like-minded people. Meet regularly to support each other and plan strategies for promoting quality, patient centered care. We and others like us need to "Be that one lit candle in the darkness." As Perry Como used to sing "If everyone lit just one little candle, what a bright world this would be."
Now, what else can we do? One of the only ways end of life can change is public education. If enough people understand what quality end of life care is they will demand that level of quality. The public needs to understand that just because you can provide certain medical treatments, it doesn't mean that providing those treatments are in the best interest of the patient. If people understand just that much, they will at least begin asking questions. The public needs to know there are new rules for end of life care, that caring for someone at the end of life is different than caring for someone who can get better. Education is our key.
There is another way you can play an important role and keep your passion. Start teaching. Contact community groups (Legionnaires, Junior League, Kiwanis), speak at church groups (Stephan Ministries, parish nurses, lay ministers, Sunday school groups), speak to local journalists, see if someone will write an article----become a voice for quality end of life care.
One of the tools of education that I suggest using in community groups, churches, medical communities, is my dvd kit NEW RULES for End of Life Care. The 25 minute film is full of education on caring for someone at end of life, yet it is emotion evoking and beautifully photographed.
Barbara, How do I deal with people that aren't compassionate with the death of a loved one.
We all grieve in our own way. What we feel on the inside is not necessarily reflected in our actions and words. What people see on the outside may not be what the person is experiencing, thinking, or feeling. Our world is called the “world of illusion” for good reason. We can say one thing and think a different thing. I can tell you how lovely I think your dress is and think to myself that it is the ugliest dress I have ever seen. What we think and what we say doesn’t necessarily match---illusion.
First, let’s not judge a person’s grief by their words or actions. We don’t really know what is going on inside this person. Second, grief is manifested in many ways--anger and depression being two of them. Sometimes grief comes on an intellectual level and we try to bypass the emotional level (although the emotions will come out somewhere). We sometimes deny our grief (that too will manifest somewhere, sometime). We grieve according to our personality. My personality might dictate that I not show anger, yours that you are enraged. Our personality will manifest itself in our grieving.
So --how do we deal with this “non-compassionate” person? We try to support them as they are. Be a presence if they will allow you to be with them. It isn’t what you say, there aren’t any words that can make a person feel better. It is your being available and supportive. Supportive doesn’t mean agreeing with. It just means listening and saying “I hear you.”
If there is a way to lend your copy of MY FRIEND, I CARE, my grief book, to someone who is "non-compassionate", you may find that it opens them to tenderness. They may have unresolved grief that it could help with.
Barbara, People have asked me when and how I can offer others your booklets.
With anyone, an acquaintance or close friend, you can always just say, “I have some materials I have found helpful, would you like to see them?” Depending upon your relationship with the person who is dying you might give the booklets to someone close to the patient and suggest they read them first to see if they feel comfortable with them.
A Time To Live is for a person with a life threatening Illness. Some people with a life threatening illness read Gone From My Sight: The Dying Experience even though Gone From My Sight and The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death are written for the family and caregivers.
When a person is not eating, is withdrawing, and sleeping more they are beginning the dying process (that will be two - four months before death actually occurs). This is the time to give Gone From My Sight to a family member. When a person begins sleeping with their eyes partially open and has the signs from Gone From My Sight of one - three weeks before death, give The Eleventh Hour. Then use My Friend, I Care: The Grief Experience as your sympathy card following the death.
None of this is set in stone, common sense and intuition are your best guides at times like these.
If uncommon symptoms arise during the dying process, I am happy to answer any questions here on my site or on my Facebook Group, End of Life Care and Bereavement. My "door" is always open to support you.
Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?
There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.
The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.
Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight for a description of all the signs of approaching death).
Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.
Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead. Also beware of choking.
When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.
Although I believe that I have answered your question, I wanted to link another blog article that I wrote to help solidify the information above. Alzheimer's Dementia Patients and Hospice.
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