In a comment on one of my posts, DeeSign asked a very good question. Are there death mentors? And the answer is "yes." Well, mostly yes. I'll get to that qualification in a minute.
Several hospices provide support to the dying through doulas. In American society, doulas are commonly thought of as support persons during a birth. But like birth, there is a life force transitioning within a family at end of life - however rather than someone entering the world, someone is leaving the world.
The Hospice of Michigan uses social workers to perform the role of death doula.
Hospices are traditionally very dependent on trained volunteers, many of whom serve as an end-of-life doula. For instance, in NYC, hospitals train “CARE-ing Doula” volunteers to provide comfort and companionship to hospitalized patients and their families, particularly at the end of life. At another site in Manhattan, doctors use the Yiddish word for funeral, "levaya," which means "to accompany" to refer to companions who spend time with the dying to ensure that they do not die alone.
There are even doulas to support families as their pets are at the end-of-life: Thanadoulas for dying pets. Thana is Greek for death; Doula is Greek for servant.
If you live in NYC and would like to become a doula for the elderly, please see this site for Washington Heights' Isabella Geriatric Center. The Shira Ruskay Center in New York City also offers a doula training program.
Hospices exist throughout the country. If you have an interest in end-of-life issues and would be interested in serving a dying person as a doula, please contact your local hospice and inquire about volunteer opportunities. I recommend ensuring that the hospice has a good training program in place before offering to volunteer.
Hopefully more and more hospitals with palliative care programs will consider the value of training end-of-life doulas. At the present time, such a program does not exist at my hospital. But as I get more and more involved in the palliative care program there, I will definitely become a stronger advocate for this resource for people who are dying. I am seeing more and more cases where patients simply want someone to sit by their bed and hold their hand. Unfortunately, in a busy hospital setting, nurses are only able to spend so much time providing this type of support.
I want to add one more note with regards to the term "mentor," however. None of us has died before. Some people may have had near death experiences and been brought back. But if you are still alive, you have not truly died in the full sense of that word and that experience. We have learned an abundance from people who have had near death experiences, so I don't mean to devalue that insight when I say that. My point instead is that no one living can honestly be a "mentor" in the traditional sense of that word. I think that is why "doula" is so often used instead. We can try to empathize with the dying and accompany them on their journey through the process of dying as best as we can. But in so many senses, it is the dying whom are teaching us. My mentors are largely my patients.
Sunday, January 30, 2005
Saturday, January 29, 2005
The Right to Death - my response
In Jeremy's blog he proposed an interesting question that I thought I would share with readers of my blog whom may not read his blog as well.
"The old man suffering from a terminal lung disease went on television tonight to announce that tonight he was going to take his own life, after having a "Living Wake" with friends and family. Then he was to have a steak dinner, go home, sit in his favourite chair, and suffocate himself with gas, while his family stood by and watched. The man had decided that his life of pain was going to come to an end, on his term at a time of his choosing... The report made the 6pm and 11 pm CTV news here in Montreal. I suppose that at this time he is dead already... I understand that it is legal here to take ones own life. Do you agree? or don't you agree? Do you think that taking ones life should be allowed, and if you were asked to support someone who decides to make this decision, would you and could you? What is your view of suicide and or assisted suicide?"
Here is my response: I definitely support the right to die. However, I think suicide should be treated very simiilarly (interestingly enough) to gender reassignment. People who are terminally ill could go through a similar process of psychiatric evaluation. Ensure that their desire to end their life is not based in biochemical imbalances or suffering that there may be alternative solutions for. Take the time to go through each of the reasons the person wants to end their life. Give a whole-hearted attempt to find alternative answers to those concerns. But if the end of the journey still winds up at the same crossroads, the person's wishes should be respected. I think it is ironic in American society it is considered ethically acceptable to take someone else's life via the electric chair and then declare suicide illegal. I had a great aunt whom I've blogged about who had Lou Gehrig's disease and wanted to commit suicide, but her disease process actually took her plans away from her and then her husband put her on a respirator against her wishes, prolonging her life even further beyond what she wanted. Then I had a great-grandfather who got deported from the US because he'd attempted suicide. He probably did need some major psychiatric interventions, but was instead kicked out of the country. I see no compassion in that US law - well, nor many of our laws - the truth be told.
I would ask for you to tell me your thoughts on this ethical dilemma, but I think it would be only fair for you to post them on Jeremy's site where this discussion began. I will go there to hear what other people had to say.
POST-SCRIPT:
I recently learned that in Oregon, where physician-assisted suicide is legal, they actually follow similar guidelines to the ones I have suggested - must go through a second opinion by another doctor, must go through a psychiatric evaluation if either of the doctors think it is necessary, etc. I will likely post a summary of those guidelines at a later date.
"The old man suffering from a terminal lung disease went on television tonight to announce that tonight he was going to take his own life, after having a "Living Wake" with friends and family. Then he was to have a steak dinner, go home, sit in his favourite chair, and suffocate himself with gas, while his family stood by and watched. The man had decided that his life of pain was going to come to an end, on his term at a time of his choosing... The report made the 6pm and 11 pm CTV news here in Montreal. I suppose that at this time he is dead already... I understand that it is legal here to take ones own life. Do you agree? or don't you agree? Do you think that taking ones life should be allowed, and if you were asked to support someone who decides to make this decision, would you and could you? What is your view of suicide and or assisted suicide?"
Here is my response: I definitely support the right to die. However, I think suicide should be treated very simiilarly (interestingly enough) to gender reassignment. People who are terminally ill could go through a similar process of psychiatric evaluation. Ensure that their desire to end their life is not based in biochemical imbalances or suffering that there may be alternative solutions for. Take the time to go through each of the reasons the person wants to end their life. Give a whole-hearted attempt to find alternative answers to those concerns. But if the end of the journey still winds up at the same crossroads, the person's wishes should be respected. I think it is ironic in American society it is considered ethically acceptable to take someone else's life via the electric chair and then declare suicide illegal. I had a great aunt whom I've blogged about who had Lou Gehrig's disease and wanted to commit suicide, but her disease process actually took her plans away from her and then her husband put her on a respirator against her wishes, prolonging her life even further beyond what she wanted. Then I had a great-grandfather who got deported from the US because he'd attempted suicide. He probably did need some major psychiatric interventions, but was instead kicked out of the country. I see no compassion in that US law - well, nor many of our laws - the truth be told.
I would ask for you to tell me your thoughts on this ethical dilemma, but I think it would be only fair for you to post them on Jeremy's site where this discussion began. I will go there to hear what other people had to say.
POST-SCRIPT:
I recently learned that in Oregon, where physician-assisted suicide is legal, they actually follow similar guidelines to the ones I have suggested - must go through a second opinion by another doctor, must go through a psychiatric evaluation if either of the doctors think it is necessary, etc. I will likely post a summary of those guidelines at a later date.
Friday, January 28, 2005
Angry Denial Scenario: Part 2
Great responses! Here are a few more questions I'd like to throw out there after reading all of your thoughts in the comments section of my last post:
1) Would you not take her demands that people leave as her telling us that perhaps she would prefer to die alone? What about asking her this directly? (ie You have asked people to leave the room when they come by, I just want to understand your wishes better. Would you prefer to die alone or might I just sit here with you for awhile each day?
2) Knowing the stages of grief, as you've mentioned, Jeremy, in your response, would you explain the stages to her as a way of acknowledging the feelings she's expressing and to normalize them for her? ie You seem very angry. - wait for a response before jumping into education - as this line alone may get her to start talking to you about what she's going through. THEN either later or immediately if she is not talking, explain the stages of grief and acknowledge that what she is feeling is normal. Even if she never wants visitors, knowing that what she is feeling has been felt by others before her will also make her feel less alone in her suffering.
What are your thoughts? Again, there are no definitively right answers with these scenarios.
1) Would you not take her demands that people leave as her telling us that perhaps she would prefer to die alone? What about asking her this directly? (ie You have asked people to leave the room when they come by, I just want to understand your wishes better. Would you prefer to die alone or might I just sit here with you for awhile each day?
2) Knowing the stages of grief, as you've mentioned, Jeremy, in your response, would you explain the stages to her as a way of acknowledging the feelings she's expressing and to normalize them for her? ie You seem very angry. - wait for a response before jumping into education - as this line alone may get her to start talking to you about what she's going through. THEN either later or immediately if she is not talking, explain the stages of grief and acknowledge that what she is feeling is normal. Even if she never wants visitors, knowing that what she is feeling has been felt by others before her will also make her feel less alone in her suffering.
What are your thoughts? Again, there are no definitively right answers with these scenarios.
Thursday, January 27, 2005
Your Truth: the Angry Denial Scenario
You have a 45 year old woman admitted to the hospital for uncontrolled dyspnea (difficulty breathing) related to metastatic lung cancer. You know that her increasing dyspnea is a sign she is getting closer to the end of her life. Her dyspnea has gotten progressively so severe during this hospitalization that you predict she has anywhere from one week to a month left to live and will very likely die during this hospitalization, as she is requiring heavy amounts of IV morphine to control her dyspnea. Although she is aware enough of the fact that she is dying that she has requested a palliative care room in the hospital, she refuses to discuss her death. In fact, she refuses to talk to anyone about anything. When people enter her room, she simply tells them to leave. She allowed one social worker to remain in her room long enough to ask a few questions.
This patient was divorced just prior to getting her diagnosis. She has an eight year old daughter from her previous marriage whom is now living with the father. The patient refuses to allow her daughter to visit her in the hospital. When the social worker asked if she would like to say goodbye to her daughter, the patient answered an angry "no." When the social worker asked if she'd like to write a letter to her daughter that the daughter could read later, the patient again answered with an angry "no." That is the most dialogue anyone has been able to have with her.
What would you do? Here are some options:
-Leave her alone as she clearly does not want any company.
-Sit quietly at the bedside, not forcing her to talk, but remaining present in case she wishes to talk.
-Try sending in other members of the team, such as a chaplain, to see if they have any better luck in getting her to talk.
-Ignore her stated wishes and go ahead and arrange for the ex-husband to bring the child in, so that the child may find some resolution for herself.
-Strongly encourage the patient to try anti-depressants and/or anxiolytics (anxiety meds).
Once again, I am not endorsing any one of these options, just listing a few ideas to get the ball rolling. How would you approach this patient and this scenario?
This patient was divorced just prior to getting her diagnosis. She has an eight year old daughter from her previous marriage whom is now living with the father. The patient refuses to allow her daughter to visit her in the hospital. When the social worker asked if she would like to say goodbye to her daughter, the patient answered an angry "no." When the social worker asked if she'd like to write a letter to her daughter that the daughter could read later, the patient again answered with an angry "no." That is the most dialogue anyone has been able to have with her.
What would you do? Here are some options:
-Leave her alone as she clearly does not want any company.
-Sit quietly at the bedside, not forcing her to talk, but remaining present in case she wishes to talk.
-Try sending in other members of the team, such as a chaplain, to see if they have any better luck in getting her to talk.
-Ignore her stated wishes and go ahead and arrange for the ex-husband to bring the child in, so that the child may find some resolution for herself.
-Strongly encourage the patient to try anti-depressants and/or anxiolytics (anxiety meds).
Once again, I am not endorsing any one of these options, just listing a few ideas to get the ball rolling. How would you approach this patient and this scenario?
Tuesday, January 25, 2005
The Don't Tell Scenario: Part 2
Thank you to all of you who commented on my last post. You all clearly put a lot of thought into your responses and shared so much of your personal lives. I learn so much from you as well as from my patients!
I don't really know the answer to this scenario. I don't think there is one definitive answer. Just as the diversity of your responses shows - I think each patient needs to be approached individually.
Interestingly enough, just today, I came across an intake form for a palliative care program at another hospital. On the form, they asked:
"The news of my updated health status may result in the need for additional information and decision-making about my care (please check all that apply):
"I want to understand the meaning of my health status and what my future holds.
"I want the doctor to answer only the questions that I ask.
"I want the doctor to talk to my (partner, spouse, son, daughter, father, mother, or ________) instead of me about my health status.
"I only want the doctor to talk to my loved ones with me present."
Although I think forms are helpful, as RisibleGirl illustrated in her comment, they come with certain risks. But why not ask each patient this question in person?
Let the patient decide for him/herself what they feel they are ready to hear. And if they say, "I want you to only talk to my family," then fine. The patient concurs with his/her family's wishes. If they say, "I want the doctor to answer only the questions I ask, then tell the family what the patient said and answer her/him honestly.
Secondly, I would also suggest following any question of "Why am I here?" with "Why do you think you're here?" which is actually what I did in one of these types of situations. Often, even if the patients have never been told outright, they suspect that they may be terminally ill. If you open that conversation, they may tell you for themselves.
This was not an easy question or dilemma. I have been in a similar situation a couple of times and spent long hours grappling with what to do. Thank you - each of you - for sharing your input. I hope you read each others' comments, too. Again, I learned tons from each of you. And I hope you found the scenario thought-provoking. Thanks again.
What do you think? Shall I come up with another scenario?
I don't really know the answer to this scenario. I don't think there is one definitive answer. Just as the diversity of your responses shows - I think each patient needs to be approached individually.
Interestingly enough, just today, I came across an intake form for a palliative care program at another hospital. On the form, they asked:
"The news of my updated health status may result in the need for additional information and decision-making about my care (please check all that apply):
"I want to understand the meaning of my health status and what my future holds.
"I want the doctor to answer only the questions that I ask.
"I want the doctor to talk to my (partner, spouse, son, daughter, father, mother, or ________) instead of me about my health status.
"I only want the doctor to talk to my loved ones with me present."
Although I think forms are helpful, as RisibleGirl illustrated in her comment, they come with certain risks. But why not ask each patient this question in person?
Let the patient decide for him/herself what they feel they are ready to hear. And if they say, "I want you to only talk to my family," then fine. The patient concurs with his/her family's wishes. If they say, "I want the doctor to answer only the questions I ask, then tell the family what the patient said and answer her/him honestly.
Secondly, I would also suggest following any question of "Why am I here?" with "Why do you think you're here?" which is actually what I did in one of these types of situations. Often, even if the patients have never been told outright, they suspect that they may be terminally ill. If you open that conversation, they may tell you for themselves.
This was not an easy question or dilemma. I have been in a similar situation a couple of times and spent long hours grappling with what to do. Thank you - each of you - for sharing your input. I hope you read each others' comments, too. Again, I learned tons from each of you. And I hope you found the scenario thought-provoking. Thanks again.
What do you think? Shall I come up with another scenario?
Saturday, January 22, 2005
Your Truth: The Don't Tell Scenario
I was so captivated when I ran into the blog: The Other Side of EMS. I like how he posted a scenario and then asked for others' opinions and thoughts on what they would do. I've kept hoping for a new post from him as I find these quite thought-provoking, but he hasn't written one like this since October. So I thought I'd throw one out there.
You have an 87 year-old widowed male with mild dementia. He has a history of manic-depression which is not currently being treated. On this admission, an MRI suggests he has pancreatic cancer. Due to his age and his dementia and the poor prognosis of the disease, his three children have decided not to treat the cancer. They enroll him in the palliative care program while they make arrangements for home hospice. The family has been adament with the doctors and the nurses that they do not want him to know that he has cancer nor do they want him to know that he may be dying. They site his history of mental illness as their reasoning. They are also worried that his manic-depression will recur if he hears such distressing news. In addition, due to his dementia they doubt he will rememeber that he has cancer even if he is told multiple times.
What do you do? Do you honor the family's wishes or tell the patient despite their stated preferences? Do you educate the family on the importance of open communication during the end of life or do you assume that part of their desire not to tell their father comes from their own discomfort with the prognosis and thus give them time to adjust? Do you stress the importance of giving their father the opportunity to find closure in his life? Do you feel confident assuring them that you will treat the manic-depression if it recurrs regardless of his understanding of his current prognosis - knowing this could happen after they go home when the patient is no longer under your care? Understanding that this diagnosis is new for them too, do you do nothing and simply hope that over time they will change their mind when they are ready? Do you agree that it's futile to tell him since he probably won't remember anyway? I'll say no more, I don't want to give away too many options, as I genuinely want to hear your thoughts.
But one more question: in the meantime, as you are deciding how to best handle the situation, what do you tell the patient when he directly asks you why he is in the hospital?
My post called should we let her know she's dying just hints at my opinion on this subject. But I would be quite interested in understanding your unadulterated opinions before I ellaborate on my own.
You have an 87 year-old widowed male with mild dementia. He has a history of manic-depression which is not currently being treated. On this admission, an MRI suggests he has pancreatic cancer. Due to his age and his dementia and the poor prognosis of the disease, his three children have decided not to treat the cancer. They enroll him in the palliative care program while they make arrangements for home hospice. The family has been adament with the doctors and the nurses that they do not want him to know that he has cancer nor do they want him to know that he may be dying. They site his history of mental illness as their reasoning. They are also worried that his manic-depression will recur if he hears such distressing news. In addition, due to his dementia they doubt he will rememeber that he has cancer even if he is told multiple times.
What do you do? Do you honor the family's wishes or tell the patient despite their stated preferences? Do you educate the family on the importance of open communication during the end of life or do you assume that part of their desire not to tell their father comes from their own discomfort with the prognosis and thus give them time to adjust? Do you stress the importance of giving their father the opportunity to find closure in his life? Do you feel confident assuring them that you will treat the manic-depression if it recurrs regardless of his understanding of his current prognosis - knowing this could happen after they go home when the patient is no longer under your care? Understanding that this diagnosis is new for them too, do you do nothing and simply hope that over time they will change their mind when they are ready? Do you agree that it's futile to tell him since he probably won't remember anyway? I'll say no more, I don't want to give away too many options, as I genuinely want to hear your thoughts.
But one more question: in the meantime, as you are deciding how to best handle the situation, what do you tell the patient when he directly asks you why he is in the hospital?
My post called should we let her know she's dying just hints at my opinion on this subject. But I would be quite interested in understanding your unadulterated opinions before I ellaborate on my own.
Friday, January 21, 2005
Palliative Poem
The palliative care conference was great. Here's a little poem I picked up amongst the handouts:
Faith
When you have come to the edge of all the light you know
And are about to step off into the darkness of the unknown,
Faith is trusting one of two things will happen.
There will be something solid to stand on
Or, you will be taught to fly.
-patrick overter
...more to come
Faith
When you have come to the edge of all the light you know
And are about to step off into the darkness of the unknown,
Faith is trusting one of two things will happen.
There will be something solid to stand on
Or, you will be taught to fly.
-patrick overter
...more to come
Thursday, January 20, 2005
But *I* Am Not Dying
I spent at least a half an hour writing this post and then blogger malfunctioned and I lost the entire thing. So please forgive me if this second time around, I am not as eloquent. :-)
On my spiritual distress posting, Lord of Doom wrote a comment:
"If terminally ill and bedbound waiting to die then there is no real spiritual development left in this life. As some believe, our purpose here is to develop ourselves spiritually in preparation for the next world. So kind of like "cramming" and doing lots of revision in the waiting room 5 minutes before a big exam - it is simply not worth it. Might as well sit it out and wait for the exam. You'll be judged on what you've learned. You'll learn nothing new."
I both agree and disagree with this sentiment.
I write this blog in large part for my own spiritual growth. But I also hope that by reading it, others may also come to terms with the precious limited time we have in this life. So I agree - one should not wait or "cram." Just as the death clock illustrates so clearly, time is running out for each of us. Although many people get diagnosed with a disease that gives them a clear timeframe for when their death may come, many others die suddenly. We don't know when our time will come. So yes, by all means, we should be working on those tasks that become so crucial in our last hours throughout our entire lives:
-find meaning in our lives
-create meaningful relationships and connections with others
-forgive others and ourselves
-explore our spiritual beliefs and our beliefs about life after death
-create habits and practices in our lives that bring us inner peace and comfort
If we wait until we are literally on our deathbed, it's true, it will be much more difficult to accomplish these things. However, I disagree that you must just throw in the towel if you have made it to your deathbed without contemplating any of these things before.
A simple "I'm so sorry" or "I love you" can profoundly affect the lives of the people who are being left behind. If these words warm the heart of those who will remain living, this too is a spiritual act. There is no doubt in my mind that helping to further the spiritual growth of another is just as spiritually fulfilling of an act if not even more so.
On my spiritual distress posting, Lord of Doom wrote a comment:
"If terminally ill and bedbound waiting to die then there is no real spiritual development left in this life. As some believe, our purpose here is to develop ourselves spiritually in preparation for the next world. So kind of like "cramming" and doing lots of revision in the waiting room 5 minutes before a big exam - it is simply not worth it. Might as well sit it out and wait for the exam. You'll be judged on what you've learned. You'll learn nothing new."
I both agree and disagree with this sentiment.
I write this blog in large part for my own spiritual growth. But I also hope that by reading it, others may also come to terms with the precious limited time we have in this life. So I agree - one should not wait or "cram." Just as the death clock illustrates so clearly, time is running out for each of us. Although many people get diagnosed with a disease that gives them a clear timeframe for when their death may come, many others die suddenly. We don't know when our time will come. So yes, by all means, we should be working on those tasks that become so crucial in our last hours throughout our entire lives:
-find meaning in our lives
-create meaningful relationships and connections with others
-forgive others and ourselves
-explore our spiritual beliefs and our beliefs about life after death
-create habits and practices in our lives that bring us inner peace and comfort
If we wait until we are literally on our deathbed, it's true, it will be much more difficult to accomplish these things. However, I disagree that you must just throw in the towel if you have made it to your deathbed without contemplating any of these things before.
A simple "I'm so sorry" or "I love you" can profoundly affect the lives of the people who are being left behind. If these words warm the heart of those who will remain living, this too is a spiritual act. There is no doubt in my mind that helping to further the spiritual growth of another is just as spiritually fulfilling of an act if not even more so.
Wednesday, January 19, 2005
Personal Updates
I just found out that I'm going to be attending a Palliative Care Conference all day on Friday. I can't wait. Finally something to break me free from the tedium of this quarter of graduate school.
As for my beloved grandmother, she has now been transferred to a nursing home for more physical therapy before she gets sent home. Seems like good news to me. They obviously think she is too healthy for the hospital. But she hates the new nursing home. She wishes she could either go back to the hospital or go home. I hope she adjusts as I have a feeling she'll need quite a bit more physical therapy before they'll let her out of there. I put together a small package of photos to cheer her up.
As for my beloved grandmother, she has now been transferred to a nursing home for more physical therapy before she gets sent home. Seems like good news to me. They obviously think she is too healthy for the hospital. But she hates the new nursing home. She wishes she could either go back to the hospital or go home. I hope she adjusts as I have a feeling she'll need quite a bit more physical therapy before they'll let her out of there. I put together a small package of photos to cheer her up.
Monday, January 17, 2005
Pronouncing Death - Part 2
In the comments section of the previous post, I got very insightful feedback from Hospice Guy (HG). As HG and I conversed about in the prior post's comments, nurses may not legally pronounce death in most (if not all) states. On numerous occasions, I have pronounced the death (unofficially, of course, as I may not do so legally) at say 9pm. The doctor on call is seeing a patient in the Emergency Department or in the ICU and is not available to come to the floor and officially pronounce. S/he finally comes to the floor by 10:30pm (or later) and pronounces the death officially. For the records, this patient died at 10:30pm and the family are not notified until the doctor makes this official pronouncement. If the family was not present at the time of death, the family may want to come visit before the patient's body is transported to the morgue, in which case, by the time the family arrives, the patient may be undergoing rigor mortis. Absurd? I think so.
I love feedback that gets me thinking. As a result of Hospice Guy's comments, I decided to investigate further, what is included in a doctor's pronouncement of death that may be different from what the nurse does? In my process of investigation, I came across this site.
And what do you know? They agree that a thorough neuro exam is not necessary to pronounce death. Even if it were, nurses are certainly capable of conducting a neuro exam, as we do so on a regular basis with living patients.
About a month or two ago, the wife of a patient who'd died fainted in my arms when I told her that her husband had passed. While the wife was still on the floor and her sister was sobbing at the bedside, the doctor came in and conducted a very thorough neurological exam on the deceased. The nurses who had run into the room to help me with the unconscious wife were horrified. (I was too busy keeping the wife's head from hitting the ground to notice the doctor). Because first of all, the doctor did not need to spend a full ten minutes checking pain and corneal reflexes (the patient was undoubtedly dead) and could have instead helped us with the patient's wife who was still alive and breathing and unconscious on the floor.
When the family is at the bedside, we (nurses) are expected to inform the family of the patient's death (though it is usually pretty obvious to the family when it happens - though not always). And yet, we are not permitted to call the family to inform them of the death when they are not present. Even if I have worked with the same family for weeks and we have established a strong rapport, it is instead the duty of the doctor (even if s/he has never met the patient nor the family - as is the case with the on-call doctors at night).
There is a lot about the medical system that I find absurd.
Wow. I had a whole different agenda for today's post. But it was nice to get thrown off track. That is what I love most about blogging - comments that get me thinking and doing research to find answers to questions I hadn't even thought to ask myself. Thanks to Hospice Guy and to each of you who comment. Each and every comment means a lot to me. You all keep me going with this work. Thank you.
I love feedback that gets me thinking. As a result of Hospice Guy's comments, I decided to investigate further, what is included in a doctor's pronouncement of death that may be different from what the nurse does? In my process of investigation, I came across this site.
And what do you know? They agree that a thorough neuro exam is not necessary to pronounce death. Even if it were, nurses are certainly capable of conducting a neuro exam, as we do so on a regular basis with living patients.
About a month or two ago, the wife of a patient who'd died fainted in my arms when I told her that her husband had passed. While the wife was still on the floor and her sister was sobbing at the bedside, the doctor came in and conducted a very thorough neurological exam on the deceased. The nurses who had run into the room to help me with the unconscious wife were horrified. (I was too busy keeping the wife's head from hitting the ground to notice the doctor). Because first of all, the doctor did not need to spend a full ten minutes checking pain and corneal reflexes (the patient was undoubtedly dead) and could have instead helped us with the patient's wife who was still alive and breathing and unconscious on the floor.
When the family is at the bedside, we (nurses) are expected to inform the family of the patient's death (though it is usually pretty obvious to the family when it happens - though not always). And yet, we are not permitted to call the family to inform them of the death when they are not present. Even if I have worked with the same family for weeks and we have established a strong rapport, it is instead the duty of the doctor (even if s/he has never met the patient nor the family - as is the case with the on-call doctors at night).
There is a lot about the medical system that I find absurd.
Wow. I had a whole different agenda for today's post. But it was nice to get thrown off track. That is what I love most about blogging - comments that get me thinking and doing research to find answers to questions I hadn't even thought to ask myself. Thanks to Hospice Guy and to each of you who comment. Each and every comment means a lot to me. You all keep me going with this work. Thank you.
Sunday, January 16, 2005
Pronouncing Death
In most hospitals, an MD must pronounce death. However, with palliative care patients, as the nurse is the one who is watching and caring for the patients continuously, the nurse always makes his/her own pronouncement before asking the doctor to come and officially pronounce. Usually the nurse pronounces her/his own patients' death. Lately, however, I have been pronouncing other nurses' patient's deaths. Either I have been asked by fellow nurses to verify that their patients are in fact dead, because they are not yet confident in making that assessment on their own or, as in the last shift I worked, it was a chaplain who was present at the patient's death who then came searching for the patient's nurse to pronounce. In that case, that patient's nurse couldn't be located immediately, so I went to assess the patient. In that case, immediately after pronouncing the patient's death, I also prepared the patient's body for visitors.
At first, these seemed like isolated events - pronouncing the death of patients I'd had no contact with prior. However, as this has become an ongoing experience for one reason or another, I think I need to give my behavior more thought.
When I am pronouncing my own patient's death, I carry with me a very deliberate peaceful energy as I approach the patient's bed, whether or not there is any family present. But I've noticed, when a co-worker asks me to simply confirm her own assessment, I waltz swiftly into the room, place my stethoscope on the patient's chest, feel for breath sounds, and nod my head affirmatively to the nurse and then swiftly exit in my haste to get back to my own patients. And my behavior is no different whether or not there is family present at the bedside.
I'd noticed this difference awhile ago. And admittedly, the last time it happened, I did slow myself down enough to offer my condolances to the family. I think part of the awkwardness comes from not wanting to interfere with the rapport already established between that patient's family and their nurse. This role, as it is infrequent, is also not clearly defined.
I still don't have an answer - what exactly would be most appropriate. But I do know that minimally I need to slow down. Maybe putting this is writing will help sink it in better.
I hope so.
At first, these seemed like isolated events - pronouncing the death of patients I'd had no contact with prior. However, as this has become an ongoing experience for one reason or another, I think I need to give my behavior more thought.
When I am pronouncing my own patient's death, I carry with me a very deliberate peaceful energy as I approach the patient's bed, whether or not there is any family present. But I've noticed, when a co-worker asks me to simply confirm her own assessment, I waltz swiftly into the room, place my stethoscope on the patient's chest, feel for breath sounds, and nod my head affirmatively to the nurse and then swiftly exit in my haste to get back to my own patients. And my behavior is no different whether or not there is family present at the bedside.
I'd noticed this difference awhile ago. And admittedly, the last time it happened, I did slow myself down enough to offer my condolances to the family. I think part of the awkwardness comes from not wanting to interfere with the rapport already established between that patient's family and their nurse. This role, as it is infrequent, is also not clearly defined.
I still don't have an answer - what exactly would be most appropriate. But I do know that minimally I need to slow down. Maybe putting this is writing will help sink it in better.
I hope so.
Wednesday, January 12, 2005
On a Personal Note...
I usually refrain from hanging my dirty laundry out in this blog. I like that this blog is so tightly focused on death and dying. And the personal stuff I'm about to post is closely related to that subject, however I think you'll agree there is a slightly different slant to this post.
I have been feeling very down lately.
I think it's partly due to my grandmother's strokes. I did call her that day, by the way. She sounded much better on the phone than I'd expected. It turns out that her motor impairment is limited to the fine motor skills in her right hand. So although she can't write anymore, she is able to move that arm (so hopefully she'll have no trouble dancing, though I still don't imagine she'll be making it to Argentina). Her voice has improved, but her memory is shot. I feel mostly relieved, after having talked to her. Though I am still worried. I know she won't be with us forever, but it suddenly feels like the clock is ticking louder.
And then there is school... I am really struggling trying to muster up some enthusiasm. Part of the dredge of it is that my interest is in end of life, but that is not a specialty at the school I am going to. So I am studying Oncology. And I am frustrated to get so little education on death and dying so far. I did register for an elective class on death and dying this quarter. However, so far, the class sounds like it's going to be far below my learning level. I worry I won't learn anything at all. It's just very frustrating.
S keeps telling me to hang tight. She's reminded me that when I got my RN, I didn't have any idea what types of nursing would inspire me and perhaps this program will have some pleasant surprises in it as well. I guess we'll see.
I have been feeling very down lately.
I think it's partly due to my grandmother's strokes. I did call her that day, by the way. She sounded much better on the phone than I'd expected. It turns out that her motor impairment is limited to the fine motor skills in her right hand. So although she can't write anymore, she is able to move that arm (so hopefully she'll have no trouble dancing, though I still don't imagine she'll be making it to Argentina). Her voice has improved, but her memory is shot. I feel mostly relieved, after having talked to her. Though I am still worried. I know she won't be with us forever, but it suddenly feels like the clock is ticking louder.
And then there is school... I am really struggling trying to muster up some enthusiasm. Part of the dredge of it is that my interest is in end of life, but that is not a specialty at the school I am going to. So I am studying Oncology. And I am frustrated to get so little education on death and dying so far. I did register for an elective class on death and dying this quarter. However, so far, the class sounds like it's going to be far below my learning level. I worry I won't learn anything at all. It's just very frustrating.
S keeps telling me to hang tight. She's reminded me that when I got my RN, I didn't have any idea what types of nursing would inspire me and perhaps this program will have some pleasant surprises in it as well. I guess we'll see.
Sunday, January 09, 2005
Symptomatology of Dying 6: Seeing / Talking to the Deceased
As a review, some of the symptoms of dying that I have mentioned in previous posts:
One to three months prior to death:
-Anorexia
-Spiritual Distress
-Nausea & Vomiting
One to two weeks prior to death:
-Confusion
-Picking at Clothes / Tubing
Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle
-Wavering level of consciousness
Next I want to discuss when dying people see and/or talk to people who are already dead. This is a common occurrence.
Tip #1: Don’t argue with them and tell that that they are “just seeing things.”
Tip #2: Don't necessarily tell them that the dead person is coming to take them to the "other side." Case in point:
My great-aunt has been in the hospital recently for malnutrition. She has esophageal diverticula that make it very difficult for her to eat, as food gets caught in these pouches that are in her esophagus and cause her to cough and gag. As a result of this discomfort, she stopped eating altogether. Without food, she started losing weight. Finally she got to the point that she no longer had the strength to get around her house and she was bed-bound. That is when she finally agreed to go into the hospital to have a feeding tube put in.
After she was in the hospital for some time, she got transferred to a nursing home so that she could undergo physical therapy so that she could walk again before going home. While in the nursing home, one day she saw a man walk by her door who looked remarkably like her father. He was very smartly dressed just as her father had always been. She started watching for him regularly. She was so tickled that he looked like her father that she decided to tell one of the nurses and to inquire about him. The nurses response was:
RN: Oh, ma’am, they comin’ to get you.
My aunt relayed this story to me on my next visit. I have to admit, as she told me about this man who looked so much like her father, I had the same gut reaction. “Is my aunt dying? I had no idea that she was that sick!” But I held my tongue as she continued the story.
When she told me what the nurse had said, she finished the story, “Can you believe she said that? I just about wrung her neck!” I had never heard my aunt so angry in all my life.
Moral of the story: Accept whatever the patient says they see / hear as real. It is real for them whether they are seeing ghosts of people who have passed on or if they are seeing people whom they think look like people who have passed on. If they say “I saw my father this morning,” then they saw their father. If they say, “I saw someone who looked like my father,” don’t assume they saw a ghost.
One to three months prior to death:
-Anorexia
-Spiritual Distress
-Nausea & Vomiting
One to two weeks prior to death:
-Confusion
-Picking at Clothes / Tubing
Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle
-Wavering level of consciousness
Next I want to discuss when dying people see and/or talk to people who are already dead. This is a common occurrence.
Tip #1: Don’t argue with them and tell that that they are “just seeing things.”
Tip #2: Don't necessarily tell them that the dead person is coming to take them to the "other side." Case in point:
My great-aunt has been in the hospital recently for malnutrition. She has esophageal diverticula that make it very difficult for her to eat, as food gets caught in these pouches that are in her esophagus and cause her to cough and gag. As a result of this discomfort, she stopped eating altogether. Without food, she started losing weight. Finally she got to the point that she no longer had the strength to get around her house and she was bed-bound. That is when she finally agreed to go into the hospital to have a feeding tube put in.
After she was in the hospital for some time, she got transferred to a nursing home so that she could undergo physical therapy so that she could walk again before going home. While in the nursing home, one day she saw a man walk by her door who looked remarkably like her father. He was very smartly dressed just as her father had always been. She started watching for him regularly. She was so tickled that he looked like her father that she decided to tell one of the nurses and to inquire about him. The nurses response was:
RN: Oh, ma’am, they comin’ to get you.
My aunt relayed this story to me on my next visit. I have to admit, as she told me about this man who looked so much like her father, I had the same gut reaction. “Is my aunt dying? I had no idea that she was that sick!” But I held my tongue as she continued the story.
When she told me what the nurse had said, she finished the story, “Can you believe she said that? I just about wrung her neck!” I had never heard my aunt so angry in all my life.
Moral of the story: Accept whatever the patient says they see / hear as real. It is real for them whether they are seeing ghosts of people who have passed on or if they are seeing people whom they think look like people who have passed on. If they say “I saw my father this morning,” then they saw their father. If they say, “I saw someone who looked like my father,” don’t assume they saw a ghost.
Saturday, January 08, 2005
Book Review: Looking for Alaska by John Green
I laughed. I cried. I finished this novel feeling at peace.
John Green has written an amazing novel that beautifully explores hope; grief and forgetting; guilt and forgiveness; and ultimately forgiving for forgetting. The book was written for a young adult audience, but the heady, philosophical subject-matter beneath the plot would be appealing to readers of all ages. I got my hands on an advanced-reader's edition, so I'm not sure what the laws are about quoting from the book, but I may have to throw in at least one of the many powerful lines that will linger with me far long after setting this book down.
The main character is on a spiritual quest of sorts throughout the plot of the book. I consider myself a spiritual person, but not particularly religious. I appreciated the main characters exploration of multiple religions as part of this quest. Included in the novel is a nice story relayed that is attributed to the Sufists:
"A woman... was seen running through the streets of her hometown... carrying a torch in one hand and a bucket of water in the other. When someone asked her what she was doing, she answered, "I am going to take this bucket of water and pour it on the flames of hell, and then I am going to use this torch to burn down the gates of paradise, so people will not love God for want of heaven or fear of hell, but because He is God."
The heavy questions about life were nicely balanced with entertaining stories of the woes of adolescence - drinking for the first time, adolescent pranks, discovering one's sexuality, making friends.
There is, of course, a main event in the book where the plot climaxes. My partner S, tragically, had lived through a very similar experience while in college and it was this similarity that brought the book to our attention initially. But even without the extra desire to get a glimpse into what she may have been thinking on that same day in her own life, this book stands alone as a well-written, source of inspiration. I wish I could say I'd written this novel myself (though the two I've started remain unfinished in files in my apartment). John Green succeeds in doing what I try to do everyday - he brings hope and humor into the human experience that is suffering.
John Green has written an amazing novel that beautifully explores hope; grief and forgetting; guilt and forgiveness; and ultimately forgiving for forgetting. The book was written for a young adult audience, but the heady, philosophical subject-matter beneath the plot would be appealing to readers of all ages. I got my hands on an advanced-reader's edition, so I'm not sure what the laws are about quoting from the book, but I may have to throw in at least one of the many powerful lines that will linger with me far long after setting this book down.
The main character is on a spiritual quest of sorts throughout the plot of the book. I consider myself a spiritual person, but not particularly religious. I appreciated the main characters exploration of multiple religions as part of this quest. Included in the novel is a nice story relayed that is attributed to the Sufists:
"A woman... was seen running through the streets of her hometown... carrying a torch in one hand and a bucket of water in the other. When someone asked her what she was doing, she answered, "I am going to take this bucket of water and pour it on the flames of hell, and then I am going to use this torch to burn down the gates of paradise, so people will not love God for want of heaven or fear of hell, but because He is God."
The heavy questions about life were nicely balanced with entertaining stories of the woes of adolescence - drinking for the first time, adolescent pranks, discovering one's sexuality, making friends.
There is, of course, a main event in the book where the plot climaxes. My partner S, tragically, had lived through a very similar experience while in college and it was this similarity that brought the book to our attention initially. But even without the extra desire to get a glimpse into what she may have been thinking on that same day in her own life, this book stands alone as a well-written, source of inspiration. I wish I could say I'd written this novel myself (though the two I've started remain unfinished in files in my apartment). John Green succeeds in doing what I try to do everyday - he brings hope and humor into the human experience that is suffering.
Friday, January 07, 2005
Update on my Grandmother
Unfortunately, I have more news about my grandmother. She had a third stroke. I think her trip to Argentina for that dance competition will be cancelled. According to my father (who is leaving today to go visit her), she now has no short term memory, has lost the use of her right arm and hand, and she can barely walk. I'm going to wait to hear from my father before deciding when to go visit.
I just started back to school this week, too. I haven't decided whether the school work is a good distraction or a bad one. I have had moments of breaking down into tears, but mostly I am just in shock and likely denial. Despite how much I love my grandmother and how comfortable I am talking to strangers about death and serious illness, I have not been able to get myself to call my grandmother yet.
A few years ago, her hearing started to get really bad. I tried calling her, but she couldn't even hear me well enough to recognize who I was on the phone. We both finally hung up without having communicated a word and I cried tears of frustration and sadness. I think I'm afraid this phone call may be even more traumatizing. But now that I've admitted to you all that I haven't called, I think I'm ready to do it. Wish me luck.
P.S. In honor of my grandmother's life-long commitment to animal rights and welfare, may I remind people to consider the animals suffering in the aftermath of the tsunami. For information on how to help the starving animals and lost pets, check out United Animal Nations.
I just started back to school this week, too. I haven't decided whether the school work is a good distraction or a bad one. I have had moments of breaking down into tears, but mostly I am just in shock and likely denial. Despite how much I love my grandmother and how comfortable I am talking to strangers about death and serious illness, I have not been able to get myself to call my grandmother yet.
A few years ago, her hearing started to get really bad. I tried calling her, but she couldn't even hear me well enough to recognize who I was on the phone. We both finally hung up without having communicated a word and I cried tears of frustration and sadness. I think I'm afraid this phone call may be even more traumatizing. But now that I've admitted to you all that I haven't called, I think I'm ready to do it. Wish me luck.
P.S. In honor of my grandmother's life-long commitment to animal rights and welfare, may I remind people to consider the animals suffering in the aftermath of the tsunami. For information on how to help the starving animals and lost pets, check out United Animal Nations.
Thursday, January 06, 2005
The Price of Produce
My nursing school clinicals were almost over. I'd been assigned to the youngest patient on our floor. At seventeen, he was technically still considered pediatric, but they'd placed him on our adult floor. The vibrance of his youth was worn away on his warm-toned skin, leaving dark shadows under each eye. I wasn't sure why he was so quiet - was it shyness, the typical insecurities of adolescence, or depression because of his disease? Juan had been diagnosed with leukemia just days ago.
Both the disease and the chemo sapped most of his energy, but somehow I convinced him to walk around in the halls while the nurse's aid made his bed. As he got up, I noticed a large quantity of his thick black hair clinging to his pillow. Although hair loss is a normal side effect from chemo, seeing this beautiful young man's hair piled limply where his head had lain hit me like a piano fallen on my chest. I turned and watched him slowly make his way out of the room like an 80-year-old man.
Most of our leukemia patients are in their 50's or older. The younger ones (in their 20's) usually come in with Hodgkin's, which is usually easily curable. Juan wasn't so lucky.
I tried hard to make him smile during the two days I worked with him, but I never succeeded. It broke my heart to see this handsome young man looking so forlorn. I refused to give up so soon. Over the next two days I had off, I tried to think up ways to make him laugh. I had a plan. The next day I came into work, however, he was gone.
ME: What happened to Juan? He still had at least another week of chemo to go. Where is he?
Heather: Oh, he didn't make it.
ME (The pitch of my voice rising in fear): What do you mean "he didn't make it?"
Heather: His cardiovascular system couldn't handle the chemo. He died yesterday.
That piano that had hit my chest while in his room? That was a feather compared to what hit me at that moment.
Juan's family was in the States illegally. Juan's family had avoided medical care in fear of deportation. After Juan had lost 30 pounds and looked like skin and bones, they worried. His mother fed him extra from her share of every meal to help him gain weight, hoping that would fix him.
But as days passed, Juan started getting nose bleeds that wouldn't stop. Bruises popped up unexpectedly. And then the fevers and chills came. Juan's bed shook with the force of his shakes (or rigors as we call them in medicalese). There was no doubt; he needed a doctor. Even though they didn't have the money to pay a doctor, even though the doctor might turn them away because they were illegal immigrants, or worse - they also might get sent home to even less medical care, their son was seriously ill and his health was worth the risk of deportation.
As a migrant farm worker, Juan's family had watched other children die of leukemia. The pesticides on the nearby produce permeated the air they breathed, clung to the clothes that Juan's father wore to work and brought back home to him. They'd come here to find a better life, but instead they'd lost a life.
When I go to the grocery store and am tempted by the cheaper prices of the non-organic produce, I think of Juan.
Juan, may you rest in peace. And may you finally smile again.
Both the disease and the chemo sapped most of his energy, but somehow I convinced him to walk around in the halls while the nurse's aid made his bed. As he got up, I noticed a large quantity of his thick black hair clinging to his pillow. Although hair loss is a normal side effect from chemo, seeing this beautiful young man's hair piled limply where his head had lain hit me like a piano fallen on my chest. I turned and watched him slowly make his way out of the room like an 80-year-old man.
Most of our leukemia patients are in their 50's or older. The younger ones (in their 20's) usually come in with Hodgkin's, which is usually easily curable. Juan wasn't so lucky.
I tried hard to make him smile during the two days I worked with him, but I never succeeded. It broke my heart to see this handsome young man looking so forlorn. I refused to give up so soon. Over the next two days I had off, I tried to think up ways to make him laugh. I had a plan. The next day I came into work, however, he was gone.
ME: What happened to Juan? He still had at least another week of chemo to go. Where is he?
Heather: Oh, he didn't make it.
ME (The pitch of my voice rising in fear): What do you mean "he didn't make it?"
Heather: His cardiovascular system couldn't handle the chemo. He died yesterday.
That piano that had hit my chest while in his room? That was a feather compared to what hit me at that moment.
Juan's family was in the States illegally. Juan's family had avoided medical care in fear of deportation. After Juan had lost 30 pounds and looked like skin and bones, they worried. His mother fed him extra from her share of every meal to help him gain weight, hoping that would fix him.
But as days passed, Juan started getting nose bleeds that wouldn't stop. Bruises popped up unexpectedly. And then the fevers and chills came. Juan's bed shook with the force of his shakes (or rigors as we call them in medicalese). There was no doubt; he needed a doctor. Even though they didn't have the money to pay a doctor, even though the doctor might turn them away because they were illegal immigrants, or worse - they also might get sent home to even less medical care, their son was seriously ill and his health was worth the risk of deportation.
As a migrant farm worker, Juan's family had watched other children die of leukemia. The pesticides on the nearby produce permeated the air they breathed, clung to the clothes that Juan's father wore to work and brought back home to him. They'd come here to find a better life, but instead they'd lost a life.
When I go to the grocery store and am tempted by the cheaper prices of the non-organic produce, I think of Juan.
Juan, may you rest in peace. And may you finally smile again.
Monday, January 03, 2005
Going Home
Assuming as we all know makes an @$$ out of u m e, right?
I was very pleased with myself for getting things set up swiftly so that Mr. Handsome could go home shortly after the new year. As I'm taking him his pain and nausea medications so that he'll be comfortable on his way home, he stops me short.
"Thank you so much for taking such good care of me," he begins.
"You're welcome. It's been a pleasure working with you." And I truly mean that.
"I don't want to go home," he admits.
What? I think. I am totally thrown off. Why would you want to stay in the hospital, I wonder. But I remain silent and wait.
"I have been feeling really sick with this cancer and I live alone and don't have anyone to take care of me."
He must see a shade of doubt across my face as I run through images in my head of his loving partner and his friends who have been visiting over the past three days.
"My partner and I broke up about 3 weeks ago. He couldn't handle my being sick. He still visits on ocassion, but most of the time I am alone in my apartment," he explains.
"What about the other friends who have been visiting?" I inquire.
"I don't want to be a burden to my friends, so I won't ask them for help. I feel much better staying here where you and the other nurses take care of me."
The thought had not occurred to me that he might feel so unsupported. His friends stayed long hours and even patiently read magazines in his room while he slept.
My first lesson for 2005, which I supposedly learned in about the second grade. That bad word... Ass-u-m-e.
I was very pleased with myself for getting things set up swiftly so that Mr. Handsome could go home shortly after the new year. As I'm taking him his pain and nausea medications so that he'll be comfortable on his way home, he stops me short.
"Thank you so much for taking such good care of me," he begins.
"You're welcome. It's been a pleasure working with you." And I truly mean that.
"I don't want to go home," he admits.
What? I think. I am totally thrown off. Why would you want to stay in the hospital, I wonder. But I remain silent and wait.
"I have been feeling really sick with this cancer and I live alone and don't have anyone to take care of me."
He must see a shade of doubt across my face as I run through images in my head of his loving partner and his friends who have been visiting over the past three days.
"My partner and I broke up about 3 weeks ago. He couldn't handle my being sick. He still visits on ocassion, but most of the time I am alone in my apartment," he explains.
"What about the other friends who have been visiting?" I inquire.
"I don't want to be a burden to my friends, so I won't ask them for help. I feel much better staying here where you and the other nurses take care of me."
The thought had not occurred to me that he might feel so unsupported. His friends stayed long hours and even patiently read magazines in his room while he slept.
My first lesson for 2005, which I supposedly learned in about the second grade. That bad word... Ass-u-m-e.
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