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 to support an RN who gets yelled at by families and MDs at this precious time of life...it is a constant battle. The hospice MDs are more stressed than ever.
The word “constant” concerns me because that implies it is happening a lot. Are you referring to yourself or physicians and families in general yelling at RN’s? If it is just yelling at you then I suggest you look at your people skills. Most families are stressed, tempers can flare, nerves are frayed. It is up to us as professionals to use our communication skills to ease the tensions. The next step is to not take the family tensions personally. Do your job of educating, supporting, and guiding then leave the tensions where they originated and move on to the next family.
Physicians are a different challenge. In the hierarchy of the health care professions it is the physician that has the power, makes the referrals, writes the prescriptions, calls the shots. SO, again using our communication and people skills is a huge part of our job.
There is a thin line being walked with end of life care when it comes to a good number of referring physicians. Instinctively they have a hard time releasing treatments. I used to tell my nurses if you don’t want something from the attending physician don’t call them with just an update. They will think they have to do something. It is just their nature. I know that is an exaggeration so I will qualify it and say not all physicians are in this category but you get my point. Physicians are often going against their own beliefs by referring to hospice. They are uncomfortable, and that internal conflict is often directed at the hospice employee. Or they could just be an unpleasant, irritable person (they are everywhere, not just in health care).
What do you as an employee do? If it is a big outburst and in your eyes inappropriate and unacceptable tell your supervisor. Ask that they speak to the physician about the appropriateness of the interaction. If it continues ask that you do not work with the particular physician’s patients.
Again, do not take the conflict personally. Look at your part of the disruption. Learn what you can from the interaction and then let it go.
We of all people know the precariousness of living. We see daily how quickly our time on this planet is over. Time is too precious to let negative interactions with others affect how we enjoy each day.
Something more about Getting Yelled At:
There is a special kind of pressure that the EOL nurse feels- helping the patient have a "good death", caring for families who are under duress, and doctors who may feel failure that their patient is in hospice. But you, the caregiver need care too! Caregiver burnout happens when we only care for others. I wrote a new book and made a dvd to address this issue. It's called Care For The Caregiver. I hope that you take advantage of this resource!
Dear Barbara, There seem to be family caregivers who feel that everything falls on them when they have other family members, siblings, etc that could help. Burnout of the main caregiver happens and then everyone is frustrated that the caregiver isn't continuing to do more. Sometimes the caregiver gets short and verbally abusive after being the main caregiver and other family members are mad about it...
Sounds to me like you need a break. Within the family structure we have worker bees, players, watchers, talkers, all kinds of roles that get developed somewhere along the family path. We then perform the roles that are expected of us.
That is the dynamic that I think is happening here. As a worker bee myself I know it is very hard to ask for help. “I‘ll do it” is me. I may be tired, even irritable, but will keep going. I keep doing a task I have taken on (and I tend to take on lots of tasks) because that is who I am, or that is who I think I am, the role I play in the family.
Sometimes when we think that others think we are not doing enough, it may actually be us thinking that the others are not doing enough. When the worker bee caregiver is not getting enough help from other family members, often it is because others have not been asked to help. It can be hard for us to ask for help. We may want help but just don’t know how to ask for it---so we don’t ask and then feel put upon and over whelmed. It becomes a difficult situation of our own making. We don’t seem to know how to set limits for ourselves. The thing is if we don’t start asking for what we want and need, if we don’t stop doing more than we comfortably can, we will reach a point where we CAN’T continue.
Irritability can easily come with feeling overwhelmed, over worked and unappreciated. What can we do about all this? Ask for what we need. Show our vulnerability, practice saying no and setting limits for ourselves with others and with tasks. Have a family meeting and ask for the help needed. Try not to to point fingers but just honestly and directly tell those who can help that you are feeling alone in this heavy responsibly of caregiving, that you need their support and assistance. As a family, make schedules of who can do what during this meeting.
All of the above sounds so organized and reasonable BUT we are dealing with personalities, families and all of our dysfunction (We are all dysfunctional, it is the name of this life game we play). Asking for what you want may not bring you anything. What then? You can aways just walk away, leaving a mess, but it will force others to do something. (Really hard for us worker bees to do).
Something more about Which Knd of Caregiver You Are...
I suggest that nurses, caregivers and family members read A Final Act of Living, and particularly focus on the self care portion.
I'm an older nursing student who is starting a new position as a NA2 in a
lovely hospice facility. I've never experienced death from a clinical
standpoint. I have a concern. We, as hospice caregivers, will surely
become emotionally attached at different levels to our patients. How in the
world do we handle repeated losses of our patients from an emotional
standpoint. I know we will shed tears with each one, but what is the best
strategy to keep one’s emotions in check and be a beacon of strength for
the dying patient and then for the family after the passing?
This is such a powerful question. How you address it will affect how long
you remain working in hospice and end of life.
What stands out is your statement, “I know we will shed tears with each
one.” Actually, not necessarily. In fact if you cry with every death you will not
be able to sustain your balance. There definitely will be times when a
situation, family, or patient touches you on a deep level and you will cry. An
example: I walked into a room with a college boy and his girlfriend sitting on
a hospital bed listening to music. Before I could even be introduced I burst
into tears and had to leave the room. As his mother was standing with me
in the hall I told her I had a college son the same age and I saw and felt
what it would be like to have him in that bed. We talked and actually
became friends when all was over. The point I am making is that something
touched me on a personal level. If that depth was present with every
patient and family we would not be able to continue the work.
Death is not really a part of most professional caregiver’s job descriptions.
It IS for those of us who work with end of life. Most of the patient/families
we care for, we care for as people who need assistance but to whom we
are not personally attached. We guide them, support them, care for them,
but not on a personal level. We care for them on a professional level that
includes kindness, compassion, empathy as well as medical and end of life
education. This is our job and we can do it well without getting emotionally
We have to acknowledge that we are swimming against the current of
mainstream medicine. Death for those who work in end of life is not failure
or the enemy. It is the ending of the work we do. Our satisfaction in the
death of a patient is that we have helped create a sacred experience and
memory. A memory that will influence a meaningful and balanced grief
process. With our patient’s death we want to say to ourselves “job well
done”. No tears are necessary.
There will be times when something happens in the course of your work
that will shock you to your core. I remember a patient killing herself in a
horrific manner and having to contact our hospice psychologist to debrief.
There will be situations that you must retell, debrief, and share with
someone who can listen (not offer words, there won’t be any), but allow you
to unload so that you can move forward to the next patient.
It is being able to share with those who know the challenges of our work
that will keep us healthy and able to continue. It is not a sign of weakness
to share. It is a part of our responsibility to ourselves. On Friday nights after
work, a group of nurses from my office would meet at a local establishment
for beverages and conversation. There was a companionship of likeminded
and like-challenged people unwinding. It showed each of us we
were not unusual in having what ever feelings we were having, that we were normal, that we were not alone.
Something More about Tears on the Job...
It is a particular calling for those of us working with end of life. Perhaps more challenging than other kinds of caregiving. With the high number of turn over with end of life caregivers, I thought that our community needed support in how to take care of ourselves. From that vision has come my new DVD, Care for the Caregiver which will launch in February. There will be more information on my FB Group Page, End of Life Care and Bereavement in the coming days.
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.
Sign up for our newsletter and get my Top 10 THINGS YOU NEED TO KNOW ABOUT APPROACHING DEATH.