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, Will you talk about a chemical straight jacket at end of life? My mother is a dementia patient in a memory unit. Hospice now. They are giving increased Ativan & morphine to "keep her comfortable". We are in very last
days now. I don't want her to suffer, but somehow this seems wrong.
I have not heard the words “chemical straight jacket” before but I see the implication---controlling patient movements with drugs rather than physical restraints. Nursing facility regulations are very strict now about physically restraining agitated patients. Medication regulations aren't as strict if you can justify the reason.
I do not think there is a need for narcotics just because death is approaching. Dying is not painful. Disease causes pain. Dementia does not cause pain unless the person is actively hurting themselves or there is another physical condition that causes pain.
Part of the natural dying process is restlessness. There is a picking of the clothes and bed linen. There is an agitation of just not being settled, tossing, and turning. If that restlessness is not causing harm or putting the patient at physical risk then I do not feel medications are necessary. If the restlessness puts the patient in harms way (falling out of bed, injuring themselves) then Ativan or some relaxant seems appropriate.
Increased use of narcotics and relaxants as end of life approaches has become quite common in the end of life area---much to my concern. Why is this happening? One: end of life has become more medicalized, more intertwined with the medical system. We seem to have forgotten that dying is not a medical event. It is a social, communal event. (Another whole blog article) Two: I think there is a lack of understanding of the dying process. What is natural versus what is pathological (even among medical professionals). With this lack of understanding is the deep desire to keep a person comfortable. To help them approach death in as comfortable a way as possible. Not ending life but providing comfort until death comes. I think this is admirable but based in lack of knowledge. Our end of life professionals need to know this.
When working with end of life what we need to remember is to treat pain when present with as much medication as necessary to keep a person comfortable. And we continue giving that medication until the person’s last breath.
When a person is in the labor of dying and pain is not a part of the disease process, we do not need to begin a pain management protocol just because the person is dying.
I have a new resource that would be perfect for this situation. It's called HOW DO I KNOW YOU? Dementia at the End of Life. It is specifically written to help families understand their loved one's process in the final months before death. NEW RULES for End of Life Care is my DVD kit that has a whole section on narcotics at end of life. So helpful for families during the final challenging weeks.
Dear Barbara, I have seen many dying "euthanized" or given fairly heavy duty morphine drips to allow "dying in peace". I've also seen doctors recommend it to "hasten" the painful process of dying. Most people do not believe that death is not painful. I've also seen patients who ask for morphine to hasten the process.
That's my question... should a dying person be offered that choice and would it be considered medically legal?
A great question. You have actually touched on a line of thinking that a lot of people have about the use of narcotics at end of life: that the narcotic is used to end life sooner than if dying were allowed to follow its natural course.
I too have seen heavy doses of morphine given to end a life of suffering prematurely----but not often or on a regular basis. Most medical professionals approach intense pain at the end of life by giving what they deem appropriate to relieve the pain. Our objective is to relieve pain not end a life.
More common in my experience is the patient asking, not in the hours before death because they are generally non-responsive, but in the months before death to help them end their life. My answer, and I think I can speak for most healthcare professionals, is “I cannot do anything to help end your life. I can do everything in my power and knowledge to keep you comfortable”.
Now to your actual question “should a dying person be offered that choice (the choice to have enough narcotic given to end their life) and should it be considered legal? With our assisted death laws in several states it now is legal to voluntarily end your life sooner.
In the days to hours before death, legally offering the patient the option to end their suffering by an excessive dose of narcotic is really not viable because most people are non responsive. They are not in a mental place to make any kind of rational decisions. The patient will not be able to say yes or no to such an offer. Now the family can, BUT most of us are not strong enough emotionally to live with the decision to end our loved ones life prematurely, even if it is just by days or hours. That is the main reason I am against making it a legal option to end someone’s life prematurely in the name of comfort. There are too many ways that legal ability can be misused.
However, I am a firm advocate of giving however much narcotic is necessary to lessen a person’s pain. Sometimes the only viable option is to give enough narcotic to create a sleep state (induced coma) but not enough to stop breathing.
Something More about "Does Morphine = Euthanasia in the Dying":
Pain management of the dying is a complicated, emotional piece for the families of a loved one who is dying. Clarity on the subject is available in The Final Act of Living. Advance Directive information is available in the final section of the book also.
Dear Barbara, Talk about the dangers of giving morphine to one who is dying?
I have written many articles on morphine yet I repeatedly get this question. What that tells me is how big the fear is, and how lacking the knowledge, around the use of morphine.
Here are my thoughts on the use of morphine at the end of life. First and foremost dying in itself is not painful. Disease causes pain. If the disease history of the dying person is one of experiencing pain, than we must treat that pain with whatever it takes and however much it takes to keep the person comfortable until their very last breath.
There are diseases that do not cause pain. If the person's disease history is one of no pain then there is no reason to give them morphine just because they are dying. UNLESS breathing is an issue, not the normal puffing and start and stop breathing that occurs weeks and days before death, but severe labored breathing. Then a small, small, amount of morphine will often ease the difficulty in breathing. We must remember that taking in oxygen by breathing is one of the ways the body lives. If it is preparing to die then breathing and air intake will be effected. That is part of the NORMAL dying process.
I had a friend who drank an entire bottle of liquid morphine in a suicide attempt. He had no previous use of the drug, so its full effect acted on his body. He slept a long time but did not die. A different person (body size, age) might have died. But my friend didn’t . This tells me our bodies can take a lot of morphine and not stop breathing.
I will ask the obvious question here: If, when someone is in the dying process (days, hours or weeks before death), the morphine dosage were to make them die, is that really a consideration? Yes, I think it is. No caregiver wants to live with the knowledge that the medication they administered made their patient die (I think this is the center of caregivers fear of narcotic administration).
In the days to hours before death a person’s body is shutting down. Nothing works right. Circulation is slowing down (mottling, very low 60/40 blood pressure). It is circulation that makes medications work. Medications taken by mouth, skin, or rectum take a long time to be absorbed into the blood stream. Even longer if the circulation is compromised which it is when a person is dying. If you give a narcotic other than through an IV (let’s hope most people are not getting IV’s in the days to hours or a week before their death from disease) it is going to take a VERY long time for this medication to work.
If you give morphine to someone who is in the dying process hours before death and they die shortly after you administer the medication they most probably did not die from the drug. They would have died with or without the narcotic.
All of the above said, I am going to give you something to think about. The key to a gentle death is to relax. All we have to do to slip out of our body is to relax. Fear, pain, and unfinished business are what make our “labor” to leave this world longer. If someone is very agitated (fearful) and/or has a disease history of pain then giving them medications that can reduce those occurrences can be very beneficial to allowing the person to relax and have a gentle passing from this world to the next.
Something More About "Dangers of Morphine for the Dying?"...
Hospices and Palliative Care Centers are using my dvd, NEW RULES for End of Life Care to educate families on how and why morphine may be used with a loved one why is dying. It is so common for nurses to hear families say, "I don't want Mom to get addicted", and not allow use of this helpful tool. NEW RULES... can help to make this conversation so much easier.
QUESTION: Could you write about why it's so difficult for people to start end-of-life care conversations?
I was just on the phone with a woman who told me the doctor told her friend he was surprised she had lived this long with the disease having spread into other areas as much as it has. In the next breath she was telling me about CAT Scans to determine another round of radiation and possible clinical trials to be done.
As I talked about the ineffectiveness of further treatment, the diminished quality of living that comes with further treatment, and calling hospice versus continuing with the home health visits, I could feel the tension building on the phone. This was not what this woman wanted to hear from me. She told me of a National Public Radio program about a woman who was cured of her cancer of the lung by a new drug used in a clinical trial.
I realized as we talked my advice of getting hospice involved, considering stopping treatment, and living the life that is left in the best possible way, was not being well received. The patient may have been asking what it was like to die and what does the future hold, but dying was not part of the caregiver’s agenda.
I started the end of life conversation but backed off after reading the listener’s reaction. Actually, if I had been face to face and had more medical history I would have pursued the conversation even though the caregiver was uncomfortable -- but that is me. Unfortunately, too many medical professionals say what the caregiver or patient wants to hear, and not what they need to hear.
As professionals we know how to deal with tears, fears, questions, uncertainties, lack of knowledge, and wishful thinking. We have knowledge of which diseases have the best chance of being “fixed” and what “fixed” really means as far as remission and reoccurrence. Yet with all of these skills we hesitate to tell the patient/family what we really think. Way too often we encourage medical interventions until the last breath (including codes and ventilators).
The front line of truth telling is the physician. Much has been written about the challenges facing the physician as end of life approaches. Lack of training in end of life, a sense of failure if not offering something, the idea that what is learned from one patient, no matter the result, can be applied to another with better results. I think all of these factors affect the physician’s ability to say “There is nothing more we can do medically. Let’s talk about how we can keep you comfortable and living well for as long as we can.”
Healthcare workers who are not physicians are hindered in speaking of end of life issues with a patient or family by an attending physician's not initiating the conversation. Once the physician has opened the door the rest of us can step in.
No one wants to be the bearer of bad news. Americans are a death denying society. We view death as the enemy and a failure: something to be feared and avoided. Like ostriches we hide our head in the sand to keep from addressing the fact that we are all going to die someday (just don’t let someday be today).
While there are dynamics to dying from disease or old age, dying is also unique to each person. The closest we can get to determining a prognosis is months, weeks, days, or hours. There are too many factors involved in dying to be so specific as to say six months, three weeks, or twenty four hours. This inability to be specific, and the individual uniqueness, makes the job of addressing end of life issues all the more difficult.
I think the fear of telling a patient and or family that nothing can be done, that we are talking about months/weeks/days of life keeps us healthcare professionals from saying just that. What if we say a person is entering the dying process and they aren't, or don’t die when we think they will? What if we are wrong? Looking at the emotional pain we will have caused can keep us quiet.
A “safe” area of conversation can be found in Advanced Directives, speaking of end of life before faced with end of life. Most medical facilities are now required to ask if Advanced Directives are in place but it is more often than not hurried over.
It would be helpful for the patient, family and even the physicians if there was an Advanced Directives “talk” before treatments are begun to hear from the patient what their end of life wishes are before they are actually at the end of their life. Having that conversation, physician and patient, before treatment would make it easier for the physician to reopen the door when treatment options are futile.
Something more about Death as the Enemy...
In my book The Final Act of Living, I offer information about Advance Directives and their importance. A Time to Live focuses on how to make the most of the time patient has - the gift of time. Could someone you know benefit from the help offered in either of these books?
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