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 co-worker's parents died this year, within 2 months of each other. I've heard of this happening, "dying of a broken heart" maybe? Can you comment on this?
In a research study in 2012, "Mortality After the Death of a Spouse: Rates and Causes of Death in a Large Finnish Cohort", it was concluded that “excess mortality among the bereaved was high from accidental, violent, and alcohol-related causes (50% to 150%), moderate for chronic ischemic heart disease and lung cancer (20% to 35%), and small for other causes (5% to 15%). Excess mortality was greater at short ( < 6 months) rather than long durations of bereavement and among younger rather than older bereaved persons for most causes of death; it was also greater among men that women. CONCLUSIONS. The results are consistent with the hypothesis that excess mortality after the death of a spouse is partly caused by stress. The loss of social support or the inability to cope with stress may explain why men suffer from bereavement more than do women”.
Stepping outside the box of traditional thinking and into a philosophical/metaphysical realm, here are my ideas, without research to back me up, just something to think about.
I know “dying of a broken heart” is used frequently when death comes as a result of a tragic life event. I’m not sure that is actually why the person dies----however I do believe we have limited control over how our life unfolds. We live with the consequences of our choices, and our choices are the result of our thoughts. Thoughts are a powerful force, a line that directs our life.
In our grief we need to find a reason to go on living. We need to find a purpose to our life. Often people in their grief cannot find a reason once someone close them is no longer with them. We just give up our internal drive to live. Our thoughts are not about living. If you asked the person if they planned on dying soon they most likely would say no. However, they may say “I don’t want to live without her” or “ I don’t know how I am going to live without her”.
I’ve seen this happen frequently. Actually, my mother and step father died within five months of each other so I have personal experience with this line of thinking as well.
Another idea to consider: Life is school. We are born to experience, to learn. Our main teacher is other people. The interchanges and the challenges we live through with others is our class room.
Marriage, the life time or in many situations the limited time, spent intimately sharing space, feelings, ideas and experiences is one of the great classrooms. It is the opportunity to learn with and because of another person. Add children to the equation and lessons abound.
This life learning can be from positive or negative relationships. Often negative relationships offer the bigger opportunity for growth.
What I am leading up to is when that “teamwork” of a life is finished for one, it may be finished for both.
I took care of an ornery old guy who had everyone in his house walking on tiptoes most of the time. A few months following his death his wife of many, many years died. Their daughter was upset that finally her mom had a chance to live a freer life and she up and died. "How unfair is that?" was the daughter’s feeling. My perspective, not that there is any answer to her question, is that one of the major lessons in their life was their relationship together, when that ended, so did their reason for being here.
Is there comfort in that? I don’t know. I have found comfort in the idea that my step father, who was not sick until my mother got sick, couldn’t figure out how to live without my mother so on some level chose to die first.
We human beings seem to need answers to the puzzles of life. Sometimes there just aren't answers so we invent answers that bring us comfort. I don’t see anything wrong with that---kind of like sucking our thumb or twirling our hair---It is self soothing.
QUESTION: Could you talk about healthcare workers, hospice workers specifically, who have a loved one in hospice? We might feel we have all the answers, but we are human before we are hospice workers.
When my mother was in the dying process I moved her into my home and put her in the hospice I had been director of for many years. When the nurse arrived at our door the first thing I said to her was “I am Dorothy’s daughter, not Barbara, the nurse and once director of your hospice.” The saying “a person who has himself for a lawyer has a fool for a lawyer” applies to the medical arena as well.
When we are emotionally involved we cannot be as objective and clear headed as we need to be. We think with our heart and our feelings and that often clouds our judgement.
My husband tells the story of me asking our hospice nurse how long she thought my mother had to live (a question all families ask). My husband knew that I trained the nurse in the signs of approaching death, and if it had not been my mother I would not have needed to ask the question.
How much time and physical involvement the employed nurse has to dedicate to the relative on hospice or in the dying process is also important to consider. I actually quit my job as director of a hospice to care for my mother in the last months of her life. I figured I could always get another job but would never have those months with my mother again.
I was fortunate to be in a financial position that allowed me to take time off. If that is not an option tell your supervisor and see if you can have a lighter case load. Make sure to share your feelings with a friend. This is important whether you are working or not. Recognize that you will not be at the” top of your game” because all your patient’s and their experiences will be filtered through your own emotional feelings about the loved one who is also approaching death. You will not be seeing situations as clearly as you would if you yourself were not experiencing the end of life with someone you care about.
Caring for someone we love at end of life can be a double edged sword. We have the knowledge and expertise to see that our loved one is very well cared for. On the other hand we carry a heavy burden if we are still working in the end of life field. We work with intensity all day and return home (our supposed sanctuary where we recharge) only to continue the intensity in our personal lives. Support and help from others is vital.
As the holidays approach, it will be even more challenging to find time for self care. Start now by making a list of things that will bring you comfort and a list of things that are known stressors. Let go of the stressors and set dates for the things that bring joy.
QUESTION: My Mother recently died. I am the only survivor. I never married or had children and have no close friends. Who will take care of me if I become ill? What can a single person do to make her wishes known? I do have a will and POA.
I am impressed that you are looking ahead at how your life will unfold. Most people just live into their lives and are unprepared when serious, life changing events occur.
Here are some thoughts for your future. Having a will and Power of Attorney is a start but you also need an Advance Directive and to state the medical direction you want your life to take when you can no longer speak for yourself. Give this copy to your attorney and primary physician as well as any other doctors you may be working with.
Along with your Advance Directive you want to make someone your Durable Medical Power of Attorney. It can be the same person as your Power of Attorney but just having a POA does not give that person the control of your physical destiny. Being alone you will need to look to someone you trust, a good friend, your attorney. Sit down with this person and have a long conversation with them not only about the Advance Directive you have filled out but your inner thoughts about living and dying. You are giving them the power over your life and death. They will be speaking for you when you cannot speak for yourself so you need to be open and direct with them.
My thoughts for my declining years is that I will probably move in with one of my children as my parents and in-laws moved in with me and their parents moved in with them: Our family circle. Not everyone has that family tradition or even ability. I’m sure there are many others in your situation who have no family to look to for care. So what to do? Start looking at senior communities. Communities that offer independent apartments, assisted living, and in patient care. Begin your research now when you don’t need them and develop a plan.
Most American’s, in a relatively healthy body, can expect to live into their 80’s and even 90’s but may not be as independent as we want to be. The body gets harder to maneuver and maintain. As much as we all want to stay independent and in our own home, in the last year or six months of our life we will probably need some assistance. Having a plan of how and where you will physically live is a reassuring idea.
Financially, this costs money. Our health care system, Medicare, provides fairly well for diagnosis and treatment for cure and maintenance but is not so helpful when it comes to home care, end of life care and custodial care. (The majority of bankruptcies in the US are the result of medical bills.) What end of life care reimbursement needs is inclusion of in-home supervision and shift work.
In the months before death from disease (a gradual death) a person reaches the point where they cannot take care of themselves. Someone must be with them. Not everyone has the money to hire in-home 24 hour care.
To qualify for Medicaid a lot of hoops must be jumped through. Many people have too much money for Medicaid yet not enough money for in-home care. As good as some in-home care is, it is expensive and all private pay unless you have a policy for long term care: A policy that will pay for you to be in a nursing facility and will pay for in-home care. I strongly recommend you get such a policy.
Not that I expect our “good friends” to look after us when we are approaching the end of our life but we all need friends in our lives. People we can play with, relate to, have conversations with, share with, laugh with. Friends are an important part of living. Connecting and interacting helps keep us healthy. In your question to me you said you had no “close friends”. As important as it is to plan for our future as we approach our final act of living it is equally important to live fully and happily until we are dead.
Having friends, interacting with others, is an important part of that living. Even introverts need one or two people with whom to relate. I don’t know how old you are, if you are a “senior” yet, but no matter your age, make the goal for yourself to make some friends. Interact and build a small network of friends and acquaintances. Not to take care of you in your older age (you are developing a plan for that) but to fully live your life now.
I have written more extensively on Advanced Directives and a Durable Power of Attorney in The Final Act of Living. Do Not Resuscitate, Funerals, Cremation, and Grief are also covered in the book with so much more. The Final Act of Living is a comprehensive book that offers information on all aspects of the end of life experience.
QUESTION: If a family member suffers a stroke what is the right decision about whether to use a feeding tube?
I think it depends on what a person’s mind and body are like after the stroke. How severe is the damage? What is the potential for rehabilitation? Quality of living is what would influence my decision about whether to have a feeding tube.
If I had a stroke and some of my body functions were impaired, but I could think, communicate, read, understand, laugh, get out of bed, and leave the house, but I had difficulty swallowing to the point of choking, I would probably choose a feeding tube.
If I couldn't do any of those things, required someone to address my bodily functions for me, had to leave my home and be cared for in a facility, couldn’t get out of bed, and most of all did not have my mental alertness and awareness, then no feeding tube for me.
The bottom line in making feeding tube decisions is quality of life. What kind of living is the nourishment going to sustain? Are we putting the person through the discomfort of creating an artificial hole in their stomach, to then develop a routine for having liquid nourishment flowing into that stomach, just so the physical body will continue breathing? Or are we providing nourishment so the person can ENJOY the life the food is providing?
Too often we are offered life sustaining options without considering what kind of life we are sustaining. Just because we can do a medical procedure does not mean it is necessarily in our best interest to have it done. This applies to many medical options that are offered today.
Do you have a loved one in the dying process? Does your loved one have an advance directive? If not, encourage them to set it up. It will ease your mind to know their wishes when it comes to such things as feeding tubes and other medical interventions during this challenging time.
QUESTION: What to do if the Doctor suggests stopping life support?
RESPONSE: No one wants to be in the position of determining when a person dies, not doctors, not family. Yet sometimes, way too often, that decision must be made.
Our society today expects physicians to be able to keep all of us alive. Doctors “fix” people. They don’t let them die. That is society’s thinking even though it is incorrect thinking.
Everybody dies. At some point we will be faced with the dying of people we care about, at some point we will face our own approaching death AND it won’t be easy!
With our medical expertise we can keep a body breathing artificially (ventilators), heart and blood pressure working (medications), peeing artificially (dialysis), sleeping artificially (induced coma), but none of this indefinitely and why should we when death will come someday no matter what?
For discussion purposes I am going to talk about breathing and not address peeing, medications and sleeping (too many individual circumstances to muddy the discussion). What is being accomplished by keeping a body breathing indefinitely when there is no chance of fixing, no chance of returning the body to even being alert, functioning a little bit, of actually living vs. just breathing?
Our basic instinct says “I want my mom where I can see and touch her even if she isn’t responding”. The idea of never having mom (which death gives us) seems just plain unacceptable. I want mom no matter what!” “Keep her alive!” (In this case alive means breathing).
Now to the question of what to do once the unselfish decision of removing the life support medications and equipment has occurred.
Gather all the significant people and individually have each person talk with the person soon to be taken off life support. Have them say what is in their heart, positive and negative (remember there is no perfect relationship). I have no doubt that the person can hear what is being said.
Touch, hold, cry, talk. As hard as it will be tell this person you love and care about that you understand it is time for them to leave, you need to tell them you understand it is time. It isn’t okay, but you understand. Talk about the past, talk about your future, talk from your heart.
Know that when the equipment is removed breathing may continue for a bit or maybe not. It may appear they are gasping with mouth movements, maybe body movements, maybe not. Know that what you are watching is the body struggling to continue as well as struggling to cease. Think of a little chick working hard to get out of its shell. We work hard to get out of the shell we call a physical body. The effort looks harder to us the watchers than it actually is.
As you watch all this occurring continue to cry, continue to talk to your loved one, touch them, hold them, get in bed with them if you want. Say goodbye, how much you will miss them, that you wish them well on their journey. Express your love as you say goodbye.
When death has arrived ask the hospital if you can have a few moments alone with your loved one. Again, tell them goodbye, touch them, hug them if you want. Again, tell them what their life has meant to you, positive and negative. This is your last really private time. Speak from your inner most place. Know your words, thoughts and feelings will be the sails of their ship as they become gone from your sight. (I love that poem. It gives us a gentle picture of being left behind.)
I wrote Gone From My Sight thirty years ago after sitting at the bedside of hundreds of patients going throught their final act of living. I wrote it because there wasn't any information for families or patients as to what to expect during the dying process. Gone From My Sight is printed in seven languages (with Armenian being added this fall) so families all over the world can benefit from this important information. Knowledge reduces fear. If you know anyone who is going through the dying process where english is their second language, won't you check the website for a copy of "the little blue book" in their native tongue.
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