Dear Barbara, How do you approach families who refuse to allow us to administer morphine when their loved one is in excruciating pain at end of life? No amount of education seems to help.
Fear, lack of knowledge, lack of being able to really hear and understand the knowledge being given, lack of trust, living in a country where opioids (identified under the word morphine) have become a national epidemic of their own, all contribute to people’s responses.
Our job as end of life workers is to get beyond the misinformation and the fear. That won’t be done in five minutes and maybe not even in five visits. The patient may die before you make any headway BUT you have to try.
Ideally, the trust between patient, family, and nurse is established at the first visit. Working in end of life we don’t have time for the “normal” social tools. Our tools for establishing trust on the first visit include direct eye contact when speaking, sitting, or standing close, physical touch, teaching openly and honestly, and that means addressing the “goblins” in the room.
No looking at your laptop, no asking questions from the laptop, no typing on your laptop. The quickest way to break any connection you may have with a listener is to be distracted by a computer. By the way, all our people building trust tools were and often still are jeopardized by covid.
Soooooo, education, our biggest, sturdiest tool, begins on day one. Start by saying, “Taking care of someone at end of life is different than taking care of someone who is going to get better,” and then begin teaching nutrition, fluids, energy levels changes, social interaction and pain management. This teaching is 90% of the work we do. It lays the groundwork for all our further instructions and recommendations.
All this said, you know the old saying, "You can lead a horse to water but you can't make him drink?" Well, we can teach, guide, and support but we can't make a person, or persons, do something even if it is the wise thing to do.
One of the hardest parts of our work is to continue to support the patient and family as they live and, in many cases, die with the choices they have made.
When no matter how much information we have given, when we have used every tool in our tool kit to provide pain relief and all has been to no avail and rejected, our job is to continue to be supportive and gentle in the care of these human beings.
Something More... about Refusing Morphine For a Dying Loved One
When families are provided my booklet, PAIN AT END OF LIFE What You Need to Know About End of Life Comfort and Pain Management and can sit with their nurse/social worker/volunteer/chaplain to read the book, outcomes are quite positive. Showing families NEW RULES for End of Life Care will also be beneficial in helping them understand the different way that narcotics are used for someone who won't be getting better.
6 comments
Kristen
Thank you for such great education! I am a hospice admission nurse. I do believe that trust is so helpful at end of life. I do get families that are very hesitant to get the morphine and ativan(or anti-anxiety) med ordered. For those individuals, it takes a team effort and future education on each additional visit. I do try to sit, talk with eye contact, and no computer when I do my admissions. I have a cheat sheet I use for later when I chart. I know the company would love for me to do more bedside charting, but I cannot bring myself to do it. I feel it is impersonal, and I have never done it that way in my many years in various roles as a hospice nurse. Unfortunately that leads me to a lot of after hours charting.
However, sometime we have late admissions. Then the family and team are in a crisis for their whole journey of hospice. We are trying to get them to trust us that morphine is the right thing for comfort and shortness of breath. However, the family/patient just met us. This is where I feel the stigma on morphine comes in. Like you said we can just try to educate and meet them where they are at. Support and love go a long way!———
BK Books replied:
Kristen, thank you for the work you are doing. You and I are on the same
page. Blessings! Barbara
Thank you for such great education! I am a hospice admission nurse. I do believe that trust is so helpful at end of life. I do get families that are very hesitant to get the morphine and ativan(or anti-anxiety) med ordered. For those individuals, it takes a team effort and future education on each additional visit. I do try to sit, talk with eye contact, and no computer when I do my admissions. I have a cheat sheet I use for later when I chart. I know the company would love for me to do more bedside charting, but I cannot bring myself to do it. I feel it is impersonal, and I have never done it that way in my many years in various roles as a hospice nurse. Unfortunately that leads me to a lot of after hours charting.
However, sometime we have late admissions. Then the family and team are in a crisis for their whole journey of hospice. We are trying to get them to trust us that morphine is the right thing for comfort and shortness of breath. However, the family/patient just met us. This is where I feel the stigma on morphine comes in. Like you said we can just try to educate and meet them where they are at. Support and love go a long way!———
BK Books replied:
Kristen, thank you for the work you are doing. You and I are on the same
page. Blessings! Barbara
Pauline
First of all, I wish to applaud the good work done by hospice nurses.
I do understand that Haldol is a chemical restraint, sometimes used in nursing homes because physical restraints are illegal. I also believe that giving Haldol medicine causes less guilt in a nurse or care giver than tying a person down. Physical restraints can cause anger and resentment in a patient, who will experience intense frustration trying to get out of restraints. Compared to physical restraints, the patient may view some oral drops of medicine as more benign. Still, I have to wonder what the patient experiences when given this drug. From what I understand, there can be a good change in outward behavior; the patient is less of “a problem,” but internal agitation is not removed. It is difficult for an observer to see the “dehumanizing” effect of Haldol and the side effects!
First of all, I wish to applaud the good work done by hospice nurses.
I do understand that Haldol is a chemical restraint, sometimes used in nursing homes because physical restraints are illegal. I also believe that giving Haldol medicine causes less guilt in a nurse or care giver than tying a person down. Physical restraints can cause anger and resentment in a patient, who will experience intense frustration trying to get out of restraints. Compared to physical restraints, the patient may view some oral drops of medicine as more benign. Still, I have to wonder what the patient experiences when given this drug. From what I understand, there can be a good change in outward behavior; the patient is less of “a problem,” but internal agitation is not removed. It is difficult for an observer to see the “dehumanizing” effect of Haldol and the side effects!
Pauline
When should Haldol be given to a hospice patient? When should it not be given?
Have patients ever given you an opinion about how Haldol made them feel?
———
BK Books replied:
Hi Pauline, I’m sorry that I can’t answer your Haldol questions. So much
depends on each individual situation. My patients have not told me how they
feel on it as it has generally been given because of confusion and
agitation during the labor of dying. For them it tends to have a calming
effect. You might ask your physician to answer your questions concerning
Haldol. Blessings! Barbara
When should Haldol be given to a hospice patient? When should it not be given?
Have patients ever given you an opinion about how Haldol made them feel?
———
BK Books replied:
Hi Pauline, I’m sorry that I can’t answer your Haldol questions. So much
depends on each individual situation. My patients have not told me how they
feel on it as it has generally been given because of confusion and
agitation during the labor of dying. For them it tends to have a calming
effect. You might ask your physician to answer your questions concerning
Haldol. Blessings! Barbara
Angela
I hope to leave this life without morphine/pain meds if possible and have discussed this with my husband. I understand it is a fine line of how much a dying person can communicate as they progress in the active dying stages (maybe I’ll change my mind…), but my considerations are the following:
The breath pattern when dying may not mean pain. Some breathwork techniques allow an altered state in and of itself. I wonder if the body has naturally set this in motion.
Pain in labour is also one that I was willing to endure as I believe it wasn’t ‘bad’. It was just part of the process. When I face the end of life, I hope to be as lucid (even if unable to respond) as possible, including the last bodily experience of feeling pain. Maybe that is what will help me let go in the end.
Each person has their own way of living & dying, but hopefully when it’s my time, my process will be mine. Yes, this comes with discussion and understanding before events are imminent. And, I hope people will refrain from giving me medication so they aren’t scared, as the natural process unfolds.
Some would want to be medicated as much as possible because it is scary and there is no need for pain. That’s respectable too.
Hopefully this leads to discussions on what feels right for each person before getting to that point.
———
BK Books replied:
Thank you Angela for your comments. Blessings! Barbara
I hope to leave this life without morphine/pain meds if possible and have discussed this with my husband. I understand it is a fine line of how much a dying person can communicate as they progress in the active dying stages (maybe I’ll change my mind…), but my considerations are the following:
The breath pattern when dying may not mean pain. Some breathwork techniques allow an altered state in and of itself. I wonder if the body has naturally set this in motion.
Pain in labour is also one that I was willing to endure as I believe it wasn’t ‘bad’. It was just part of the process. When I face the end of life, I hope to be as lucid (even if unable to respond) as possible, including the last bodily experience of feeling pain. Maybe that is what will help me let go in the end.
Each person has their own way of living & dying, but hopefully when it’s my time, my process will be mine. Yes, this comes with discussion and understanding before events are imminent. And, I hope people will refrain from giving me medication so they aren’t scared, as the natural process unfolds.
Some would want to be medicated as much as possible because it is scary and there is no need for pain. That’s respectable too.
Hopefully this leads to discussions on what feels right for each person before getting to that point.
———
BK Books replied:
Thank you Angela for your comments. Blessings! Barbara
Shelly C.
Barbara, every time this topic comes up, I have 2 thought responses to it, and I don’t know if either would work. The first would be to consider a consult with a pain physician. That the morphine isn’t going to kill their family member, rather just make them more comfortable as they die. That’s such a simple idea that I have trouble believing that it hasn’t already been done, and probably not with a lot of success. I also always want to put on here how much morphine and oxcodone I took for pain and not only survived, but was also able to function, even driving a car, very safely… We did that last time. That just because someone IS dying doesn’t mean that their body will use the morphine in a different way than if they were NOT dying.
The second is actually in my own advanced directives, but that’s written for doctors, the bioethical principle of the Double Effect, the current standard of care. I believe most if not all doctors knows exactly what that is. Family members of a Hospice patient likely do not. I didn’t know until I worked with palliative care doctor BJ Miller out of San Francisco to write my own advanced directives. However, there’s nothing stopping those standards from being written in a language that nonmedical people can read and understand, with the ability to search the internet for the more standard medical version. That’s a little more complicated than the first one. I’ve given my directives to the ED doctors every time I go in for my breathing and they always say thank you, that’s very helpful… But of course, what else would they say? I really do believe that they do find it helpful, but a little curious that it sounds like a doctor wrote it. Mostly because one did. I’d really like to think that that principle would in fact be helpful to others dealing with Hospice patient care. It could be written in the less medical sounding version ahead of time and a few copies already printed off. No opening of a computer in a patient care area. It’s just a thought…
———
BK Books replied:
Thank you Shelly. Ideas to think about. Blessings! Barbara
Barbara, every time this topic comes up, I have 2 thought responses to it, and I don’t know if either would work. The first would be to consider a consult with a pain physician. That the morphine isn’t going to kill their family member, rather just make them more comfortable as they die. That’s such a simple idea that I have trouble believing that it hasn’t already been done, and probably not with a lot of success. I also always want to put on here how much morphine and oxcodone I took for pain and not only survived, but was also able to function, even driving a car, very safely… We did that last time. That just because someone IS dying doesn’t mean that their body will use the morphine in a different way than if they were NOT dying.
The second is actually in my own advanced directives, but that’s written for doctors, the bioethical principle of the Double Effect, the current standard of care. I believe most if not all doctors knows exactly what that is. Family members of a Hospice patient likely do not. I didn’t know until I worked with palliative care doctor BJ Miller out of San Francisco to write my own advanced directives. However, there’s nothing stopping those standards from being written in a language that nonmedical people can read and understand, with the ability to search the internet for the more standard medical version. That’s a little more complicated than the first one. I’ve given my directives to the ED doctors every time I go in for my breathing and they always say thank you, that’s very helpful… But of course, what else would they say? I really do believe that they do find it helpful, but a little curious that it sounds like a doctor wrote it. Mostly because one did. I’d really like to think that that principle would in fact be helpful to others dealing with Hospice patient care. It could be written in the less medical sounding version ahead of time and a few copies already printed off. No opening of a computer in a patient care area. It’s just a thought…
———
BK Books replied:
Thank you Shelly. Ideas to think about. Blessings! Barbara
pam
Such an important topic. So difficult for many patients, families, and caregivers. taking the time to fully understand the patient and family goals is the key to helping them. refusing morphine is typically not their goal. it is often, something different like, not wanting to be lethargic, losing control, becoming addicted, fear of death. is it when you fully understand what their goals are… like be in control, be awake when family is present, is when we can actually offer solutions to their goals, not ours. which, of course, we know, often includes morphine- and it will likely be accepted when it is to help the patient reach their goal. also, offer to be present for that first dose to add to their comfort and trust.
———
BK Books replied:
Thank you Pam
Such an important topic. So difficult for many patients, families, and caregivers. taking the time to fully understand the patient and family goals is the key to helping them. refusing morphine is typically not their goal. it is often, something different like, not wanting to be lethargic, losing control, becoming addicted, fear of death. is it when you fully understand what their goals are… like be in control, be awake when family is present, is when we can actually offer solutions to their goals, not ours. which, of course, we know, often includes morphine- and it will likely be accepted when it is to help the patient reach their goal. also, offer to be present for that first dose to add to their comfort and trust.
———
BK Books replied:
Thank you Pam