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.
Being a type A personality I am moving and doing something most of the time. Tasks are finished before they need to be. Goals are the drive behind me, not the process. From the time I get up in the morning until I go to bed at night I am generally active.
This evening as I was finishing the laundry, had dinner to get ready, and was thinking about how to orchestrate the next three days while my adult children and our grandchildren stayed with us for the holidays, I came to an abrupt halt. Most of my life is spent racing, going no where on my own personal gerbil wheel. I am running but what am I accomplishing?
Yes, I feel I have accomplishments but day to day do I really appreciate the life I have, the living I am capable of doing, the breath I take. I’m not so sure I do. I take most of all the good that I have, and I have an abundance of good in my life, for granted. On my gerbil wheel it is the mundane that gets most of my attention.
It is almost the end of another year. Year end brings reflections and ideas for the future. I’m thinking my New Year’s resolution will be to walk slower, look around me to really see, listen to the planet as it breathes, as I breath, to appreciate those I hold dear and tell them how much I care.
Working with end of life all these years has taught me the precariousness of life, it’s preciousness, and its value . Yet for all the lesson opportunities I’ve had, day to day I still spend way too much time on that darn gerbil wheel. Could what we are all looking for simply be to be in the moment, to experience, to appreciate and absorb each second that we have? No “need to”, ”what if”, “why not”. Just this is it, right now---enjoy, laugh, cry, feel and then move on to the next moment. So simple but so very hard.
QUESTION: The doctor recommended hospice for my father today (89, congestive heart failure). I believe this is probably the right thing, but how do I know this isn't about money (his Medicare is running out)? Can I really trust the doctors?
I don’t know enough about your father’s individual medical situation to know if a hospice referral is appropriate but I can address your medicare comment.
Medicare Hospice has specific requirements for admission. There must be a life threatening illness where the doctors believe the person has less than six months to live. This requirement is difficult for physicians since no one can be so specific as to say exactly how long a person has to live. Congestive Heart Failure does reach a point where a person is not fixable, where the heart is just wearing out and medications are not working effectively. Congestive Heart Failure and the fact that your father is 89 years old leads me to believe that a hospice referral is appropriate.
Now to your concerns about money being a reason for the referral: A referring physician does not and should not receive any financial reimbursement for recommending hospice so I don’t see how money can be an incentive for recommending hospice services. Hospice Medical Directors can be on a hospice payroll but their job is to interact with patients and consult with referring physicians after a referral is made. The operative word here is “after” the referral is made.
“Can I really trust the doctors?” is again impossible for me to answer. I do not have enough personal information. From a general stand point I say “sometimes”. Sometimes we can trust people, doctors included, and sometimes we can’t. It is really up to us to ask pertinent, direct questions that require decisive answers. It is up to us to do our research about treatment options and treatment vs. non-treatment. We also need to research the credentials and reputation of all of the physicians involved in our care. Were they recommended to us because they work for and are paid by the same clinic or office that our primary physician is in? Are they golf buddies? Or is this a physician that has a reputation for excellence in the area we need. It is up to us to find these things out. It is up to us to take charge of our treatment and care. Yet, when it comes to medical care, we all to often place our trust in those that we really know nothing about.
A TIME TO LIVE, Living With A Life-Threatening Illness, offers guidelines to help one live fully with their gift of time. It is the booklet to give to one who has just entered hospice care and is looking for support.
Over the years people have told me stories of a friend or neighbor who was dealing with end of life issues. They then have asked that I call that person and talk with them. I learned the embarrassing way to reply that I don’t go anywhere uninvited. They can tell their friend about me, give them my number and tell them I would be glad to talk with them BUT they have to call me.
Early in my Hospice career a friend told me about a neighbor who was struggling with the care and approaching death of her husband. Being the good neighbor I rang her doorbell, introduced myself, told her our mutual friend suggested I might be of help to her during this challenging time. Her reply was to tersley advise me they were doing quite well, thank you very much, and closed the door in my face.
In reliving this experience for the hundredth time I realized no matter how well intentioned a person is others may not see it that way. People are private individuals, they protect their privacy. They are not necessarily open to strangers getting into their space. Now add a person who is struggling, is stressed, is dealing with emotional issues of fear and uncertainty and they are not going to be receptive to a stranger approaching them out of the blue.
It is hard enough to open up to a stranger we have reached out to for help, someone with credentials, someone recommended. In our society today we have learned to be non-trusting, to be wary of strangers, strangers calling on the phone, strangers showing up at our door.
Most people in the helping professions are fix-it-personalities. We see a person struggling and our instinct is to jump in and try to fix whatever the challenge--invited or not. We are used to getting into others space, to giving opinions, making suggestions all with the intention of helping. BUT it is my opinion we need to wait for an invitation.
I go into more detail on this subject in The Final Act of Living. "Saving" a person is left to invited clergy, no one else," I write. I also share other areas that caregivers need to be "invited" to.
Don’t tell Grandma.
There has been many a time when I did a hospice assessment and a family member has said to me “Don’t tell Grandma she can’t be fixed. We don’t want her to give up hope.” That tells me right there I have a lot of educating to do--ASAP.
First, Grandma knows. We live inside of our bodies. We know. We may not share that information with others - either because others insist on playing the game of “you are going to get better” or because we are trying to protect those we love from having to deal with the sorrow of our dying.
Actually, the physician is required to tell us, the patient, before our family is involved and given the knowledge of our condition. If hospice becomes involved it is the patient who signs the paper saying they have six months or less to live. We know.
My response before the educating begins is that if it is the family’s wish I will not bring up the subject of approaching death, but I will not lie or not answer any questions the patient asks me. If that is not okay then Hospice services are not appropriate. How can you give beneficial end of life care if you can’t talk about the end of life. Now we are not going to come in and say, “Let’s talk about your dying” (which some people imagine hospice is about) but professionally we will support, guide, and instruct the patient and family during this final challenge.
In the months before death, if treatment is not an option, guidance in living life to the fullest within the confines that a person’s body and disease will allow is our goal. I try to help people see they have been given a gift, a gift of time. The opportunity to do and say what they want done and said. By not “telling Grandma” we have denied her this gift.
Remember earlier I said “we live inside of our bodies” and that Grandma knows she is dying. With that knowledge comes fear. Fear of the unknown, fear of loss of control, fear of pain. By not talking openly about her declining condition we have isolated her with the fears and concerns she is having. By talking and sharing, the fears will still be there but she won’t be alone.
“Don’t give up hope”. What does that mean? What are we “hoping” for? Hope in a miracle? We can still hope for a miracle while we know that the doctor’s are having a difficult time fixing us. Give up hope that we’ll go on living? The will to live is almost inborn. Knowing the challenges of our illness does not erase that internal drive to stay alive.
Sometimes I think we just say words we’ve heard and don’t really think of the implications of what we are saying. A family under the stress of having a loved one approach death can be a time when what is put into words is not what a person really means. How about--”I don’t want Grandma to give up hope” means “I am so scared and concerned that I want to protect this dear person that I love”. Our job as health care professionals is to guide the family to a place of understanding the gift of time that has been given.
"Dying is not a medical event. Dying is a social, communal event. And when we're at the bedside of someone who is dying, it is all about the community, about the togetherness. Not about the medical stuff..." This is one of the main points in my DVD kit: NEW RULES for End of Life Care. I speak to not only the patient, but to the caregivers, families and friends who are involved in the dying process; to shine a light of clarity in this challenging time. Do you, or someone you know need to watch "NEW RULES..."?
QUESTION: I have a man that regrets giving his father morphine for pain at the end. His father had cancer all over. What would you say to him to make him understand that he did not kill his father? After his father passed a family member made a comment that he gave morphine until his father died.
The use of Morphine is one of the most misunderstood practices I encounter with families and end of life issues. Our society is so drug conscious we tend to equate any use as misuse.
First, let’s understand end of life pain. Dying is not painful, disease causes pain. If pain has not been an issue in the person’s disease history then just because death is approaching does not mean the person is in pain. We do not need to use a narcotic for comfort. Ibuprofen is my drug of choice.
If pain has been an issue during the disease process then we certainly want to continue to provide adequate pain management until the last breath is taken. Just because a person is non-responsive (which most people are before death) does not mean that pain is not there. We also need to know that whatever was causing the pain is not removed by the narcotic. The narcotic just covers up the pain. We must keep the cover on. In end of life pain management we also need to know that the use of narcotics over time tends to require increasing the amount of the narcotic.
I am trying to put a lot of detailed information into a few words, but end of life pain management is really an all day or more workshop.
Now let’s address the major concern---hastening death with the administration of morphine (or any narcotic). When a person is days to hours before death their body is shutting down. Nothing works right. Circulation, the blood flowing through the body, is slower and less effective (this is what the bluish color to the hands and feet shows). When you give any medication at that time it does not get absorbed and become effective in the same way it would in a body that’s functioning normally. This is why giving pain medicine to someone who is actively dying is rarely the cause of death.
This father had “cancer all over”. I believe that means he had the potential for pain, lots of pain, in his disease progression. Morphine given continually is a must to keep this man relaxed and relatively comfortable. The morphine did not kill him, it allowed him to leave this world more gently than if he were suffering physically.
Now lets explore a controversial thought. What if the morphine had killed his father? He had a terminal illness. In fact his father was actually in the dying process. There was no reversing what was physically happening. Death was coming. What if hours of life (a few hours) could be extended by withholding the pain medicine? The result would be physical pain causing agitation and extreme discomfort even though the body is non-responsive. By continuing to give the morphine the last hours could be relaxed and relatively comfortable. Either way the person, as death approaches, is non- responsive. The misconception is that by withholding the narcotic the person would be alert and interactive. That is not the case. Either way the person will be non-responsive. It is just that in one scenario the person is hurting and the other they are not. What would you want?
There are so many questions and concerns about narcotics. In my dvd, NEW RULES FOR END OF LIFE CARE, I address the issue of narcotics and how they are used in end of life care.
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