I just watched the movie My Life Without Me. If you haven't heard of this movie, it's about a young woman in her early 20's who gets diagnosed with terminal, metastatic ovarian cancer. She's told she only has a few months to live. And she makes a list of everything she wants to do in that six months including: tell her two young daughters that she loves them multiple times every day, make love to another man (she's married to the man she got pregnant by when she was 17 and has never been with any other man), and get acrylic nails. Her list is longer and she achieves most of the items from her list.
The other interesting twist is that she never tells anyone that she is dying. Instead she tries to live life more passionately.
The plot was unusual and the way the writer/director Coixet carried it out ended up creating a romantic film, but I have mixed feelings with the main character's hiding her diagnosis and prognosis. In an interview, Coixet referred to the character as her role model and stated that she say it was a sign of strength that the main character did not disclose that she was dying. But I think she left out how alone and lonely that woman would have been carrying the weight of her diagnoses alone. Though honestly, the experience of dying is ultimately a solo event and thus you are alone in the end, but I have seen such beautiful, moving departures from life when people are talking openly with the people they love about the experience. So I would never encourage anyone to keep the diagnoses to themselves.
And with regards to the list. I should hope that I am always doing the things that I would do if I only had a few months to live. Because we just never know when our time will come and if we will be given any advanced warning. So I guess that is what the movie has left me with - yet another reminder to do all the things I'd want to do and say all the things I'd want to say if I only had a few months left. What's on your list?
Tuesday, August 31, 2004
Saturday, August 28, 2004
How does one cope with handling dead bodies for a living?
This was a question posed in a comment from one of my prior postings. I thought this question deserved a posting of its own.
Initially, working with people post-mortem was definitely uncomfortable. But as I've "practiced" it more and more, I've become increasingly comfortable over time. Working as charge nurse, I've had a lot more experience with this particular aspect of hospice nursing - as not only do I do post-mortem care for my own patients, but I've been helping my nurse colleagues with their post-mortem care as well. Repetitive exposure has definitely improved my comfort level.
My initial discomfort with dead bodies was also directly related to my discomfort with death in general. And as I've done a lot of inner work in dealing with my fears around death, my squeamishnesses with handling the deceased have melted away.
There are certain things that continue to disturb me. So I obviously still have work to do. See the final paragraph of my previous posting Rest in Peace as an example.
I'd love to hear from anyone else in professions that handle dead bodies - how do you cope with this unusual aspect to your job? If nothing else, I guess it reminds me of life's impermanence and the need to appreciate each moment we've got. Carpe Diem.
Initially, working with people post-mortem was definitely uncomfortable. But as I've "practiced" it more and more, I've become increasingly comfortable over time. Working as charge nurse, I've had a lot more experience with this particular aspect of hospice nursing - as not only do I do post-mortem care for my own patients, but I've been helping my nurse colleagues with their post-mortem care as well. Repetitive exposure has definitely improved my comfort level.
My initial discomfort with dead bodies was also directly related to my discomfort with death in general. And as I've done a lot of inner work in dealing with my fears around death, my squeamishnesses with handling the deceased have melted away.
There are certain things that continue to disturb me. So I obviously still have work to do. See the final paragraph of my previous posting Rest in Peace as an example.
I'd love to hear from anyone else in professions that handle dead bodies - how do you cope with this unusual aspect to your job? If nothing else, I guess it reminds me of life's impermanence and the need to appreciate each moment we've got. Carpe Diem.
Friday, August 27, 2004
Nursing Instructions: Preparing the Body for a Viewing
If a patient dies in the hospital when the family is not present, it is standard protocol to arrange the body as attractively as possible before the family arrives to say their farewells. This is not the same as care for a mortuary by a funeral director nor preparation of the body for transport to the morgue. This stage of post-mortem is focused on family comfort.
1. Close the eyes
On the hospital ward, we do not have access to the technologies that funeral directors use but we do our best. However, sometimes the eyes will not stay closed.
2. Insert Dentures
If the patient wore dentures, it is best (easiest) to place them into the deceased's mouth before rigor mortis sets. With lots of muscle power, the dentures may be inserted later (it required two people the one time I had to do this - one person holding the mouth open while the other inserted the dentures). Inserting the dentures usually makes the patient appear more "normal." However, frequently the jaw is slack and thus the dentures fall out of place and appear instead quite "abnormal." [Note: Before going to the morgue, gauze may be wrapped around the head - from the top of the head and under the chin - in order to keep the mouth shut prior to rigor mortis.]
3. Cleanse body
Standard protocol requires cleansing the entire body prior to sending it to the morgue. For the purposes of family visits, pay special attention to the face and hands. Take the time to remove crusts of secretions from the eyes, nose and mouth.
4. Comb hair
Purely for aesthetic reasons. Need I say more? The comb may need to be wet down in order to flatten rebel hairs. I often warm the water, despite realizing that the patient can no longer register the temperature post-mortum. However, little details like that may help you maintain professional composure and a sense of respect for the deceased.
5. Positioning
The bed should be adjusted so that it is entirely flat and the arms placed straight at the sides. Straighten the linens and then pull the arms out so they are laying outside of the blanket, straight at each side of the body. Hands should be accessible for family members to reach out and touch. Drop all of the side rails. We are no longer worried that the patient will fall out of the bed. Dead bodies don't generally try to get up by themselves. Removing the bed rails makes the deceased more approachable (plus it's easier to get the linens to appear straight and not bunched up).
6. Lines (IV, catheters, etc)
If the deceased is going to undergo an autopsy, all lines must remain in place. Otherwise, they may be removed before or after family viewing. Minimizing lines is ideal, however keep in mind that an old IV site may continuousy bleed even post-mortem. Seeing a growing blood stain on the sheet will be just a little distracting to the family. And you are to remove any tape on the body and cover wounds with gauze and kerlex to avoid placing tape on any skin. So pressure to minimize bleeding may be more difficult to achieve without the use of tape. Urinary catheters, IV tubing and IV bags hanging from the IV pole may be disposed of prior to the viewing.
7. Environment
Arrange chairs around the room to accommodate for multiple visitors. Place at least one or two boxes of tissues throughout the room. Remove any extra linens, medical supplies, or trash; and generally tidy the room. Dim the lights if possible. Turn on some quiet, soothing music if available.
If the family is present at the time of death, I generally delay post-mortem care for at least a half-hour. I then ask the family if they would like to participate in cleaning the body. In some cultures, this is very meaningful. If the family is not interested, I wait until their visit is complete before initiating post-mortem care so as not to create any unnecessary noise and distraction as they begin to face their grief.
I have casually studied nursing aids as they've helped me in post-mortum care. The varying attitudes and energies can reveal a lot about your co-workers. Some joke inappropriately. Some say quiet solemn prayers as they run the wash cloth over the deceased's arms. The unprofessional laughter is clearly a sign of discomfort. However sometimes severe solemnity can feel equally as disconcerting. My goal in conducting post-mortem care is to feel at peace within myself and show respect for the deceased.
Anyone have any other suggestions for post-mortem care? I welcome your input.
1. Close the eyes
On the hospital ward, we do not have access to the technologies that funeral directors use but we do our best. However, sometimes the eyes will not stay closed.
2. Insert Dentures
If the patient wore dentures, it is best (easiest) to place them into the deceased's mouth before rigor mortis sets. With lots of muscle power, the dentures may be inserted later (it required two people the one time I had to do this - one person holding the mouth open while the other inserted the dentures). Inserting the dentures usually makes the patient appear more "normal." However, frequently the jaw is slack and thus the dentures fall out of place and appear instead quite "abnormal." [Note: Before going to the morgue, gauze may be wrapped around the head - from the top of the head and under the chin - in order to keep the mouth shut prior to rigor mortis.]
3. Cleanse body
Standard protocol requires cleansing the entire body prior to sending it to the morgue. For the purposes of family visits, pay special attention to the face and hands. Take the time to remove crusts of secretions from the eyes, nose and mouth.
4. Comb hair
Purely for aesthetic reasons. Need I say more? The comb may need to be wet down in order to flatten rebel hairs. I often warm the water, despite realizing that the patient can no longer register the temperature post-mortum. However, little details like that may help you maintain professional composure and a sense of respect for the deceased.
5. Positioning
The bed should be adjusted so that it is entirely flat and the arms placed straight at the sides. Straighten the linens and then pull the arms out so they are laying outside of the blanket, straight at each side of the body. Hands should be accessible for family members to reach out and touch. Drop all of the side rails. We are no longer worried that the patient will fall out of the bed. Dead bodies don't generally try to get up by themselves. Removing the bed rails makes the deceased more approachable (plus it's easier to get the linens to appear straight and not bunched up).
6. Lines (IV, catheters, etc)
If the deceased is going to undergo an autopsy, all lines must remain in place. Otherwise, they may be removed before or after family viewing. Minimizing lines is ideal, however keep in mind that an old IV site may continuousy bleed even post-mortem. Seeing a growing blood stain on the sheet will be just a little distracting to the family. And you are to remove any tape on the body and cover wounds with gauze and kerlex to avoid placing tape on any skin. So pressure to minimize bleeding may be more difficult to achieve without the use of tape. Urinary catheters, IV tubing and IV bags hanging from the IV pole may be disposed of prior to the viewing.
7. Environment
Arrange chairs around the room to accommodate for multiple visitors. Place at least one or two boxes of tissues throughout the room. Remove any extra linens, medical supplies, or trash; and generally tidy the room. Dim the lights if possible. Turn on some quiet, soothing music if available.
If the family is present at the time of death, I generally delay post-mortem care for at least a half-hour. I then ask the family if they would like to participate in cleaning the body. In some cultures, this is very meaningful. If the family is not interested, I wait until their visit is complete before initiating post-mortem care so as not to create any unnecessary noise and distraction as they begin to face their grief.
I have casually studied nursing aids as they've helped me in post-mortum care. The varying attitudes and energies can reveal a lot about your co-workers. Some joke inappropriately. Some say quiet solemn prayers as they run the wash cloth over the deceased's arms. The unprofessional laughter is clearly a sign of discomfort. However sometimes severe solemnity can feel equally as disconcerting. My goal in conducting post-mortem care is to feel at peace within myself and show respect for the deceased.
Anyone have any other suggestions for post-mortem care? I welcome your input.
Thursday, August 26, 2004
The Unbearable Wait
Working with people who are dying is not nearly as depressing as it might sound. What I find more painful is working with patients who are waiting test results that may tell them that they are in fact terminally ill. Even the most sane and stable personalities will be concentrated down until they display signs that might under other circumstances suggest serious mental illness. The anxiety is that intolerable. I still haven't figured out how to help people cope with this level of anxiety. Anyone have any suggestions?
Wednesday, August 25, 2004
"Beautiful People Do Not Just Happen"
I may have said an out loud "Oh, no!" as soon as I saw the "Death of Dr. Elisabeth..." I knew how the title would end.
If you haven't already heard of her, I highly recommend you pick up one of her books or check out her website. Dr. Elisabeth Kubler-Ross significantly changed how dying patients are treated in hospitals. Her book, "On Death and Dying" changed me. That was the first book I read from the perspective of patients who are terminally ill. In fact, it is still one of the very best books on the subject.
Dr. Elisabeth Kubler-Ross died in her home on the 24th at the age of 78. May she rest in peace knowing how much serenity of heart she has brought to so many, myself included.
If you haven't already heard of her, I highly recommend you pick up one of her books or check out her website. Dr. Elisabeth Kubler-Ross significantly changed how dying patients are treated in hospitals. Her book, "On Death and Dying" changed me. That was the first book I read from the perspective of patients who are terminally ill. In fact, it is still one of the very best books on the subject.
Dr. Elisabeth Kubler-Ross died in her home on the 24th at the age of 78. May she rest in peace knowing how much serenity of heart she has brought to so many, myself included.
Tuesday, August 24, 2004
Physician-Assisted Suicide
Now here is a very controversial subject! I have fairly strong feelings on the subject and want to share a story to illustrate where my beliefs stem from.
First of all, as I've written in prior postings, it is not uncommon for people facing end of life to at least consider taking their own life so as not to prolong a painful ending to their life. There are several fears that seem to bring this option into serious consideration:
1. fear of uncontrollable pain
2. fear of dependency on others
3. anxiety as to what happens after death
4. anxiety waiting for the "unknown" time when death will finally take you, without your control over its timing (fear of a lack of control - ties into #2).
I'm certain there are other issues that I haven't heard yet, but these four seem to be common themes.
For most people, when these fears are addressed directly the desire to end one's life early usually dissipiates. Some of the ways to address the above are by ensuring adequate pain control, setting up home aides to help with caretaking so as not to tax familial caregivers, providing spiritual support in whatever capacity that takes, and allowing the patient to maintain as much control as possible for as long as possible.
However, there are certain conditions and/or circumstances that seem to question whether physician assisted suicide might be a reasonable option.
My Aunt Abbey was a beautiful and eccentric woman. I remember sipping my parent's grasshoppers at her poolside; her vibrant, hearty laughter; her stripped blond hair, styled just so; her dark and cozy living room.
Aunt Abbey had saved up all of her left-over prescription pills throughout her entire life. She had a lifelong fear of becoming seriously ill to a degree that would incapacitate her. She decided that as soon as she knew she was going to die, she would take her own life.
The symptom that first presented itself, informing my Aunt's doctor that she had ALS (aka Lou Gehrig's disease) was her inability to swallow. Not only was she diagnosed with a disease that would take her life excruciatingly slowly, increasingly incapacitating her over a period of years, but her means of ending her life was taken with her first symptom. This disease progressively degenerates neurons, paralyzing you slowly as it spreads throughout your body, while keeping your mind completely intact. Talk about torture!
My Aunt filled out all of the appropriate paper work. She did not want mechanical ventilation. She wanted to die as soon as her lungs became paralyzed. As is usual, my Aunt listed her husband as her DPOA (Durable Power of Attorney). By signing a DPOA, you are giving your designated person the right for to make decisions for you should you become unable - mentally or physically - to make decisions for yourself. When my Aunt got to the point that she would die if not given mechanical ventilation, however, my Uncle was by then the DPOA. Instead of following my Aunt's request, he couldn't bear to let her die. She was intubated and forced to continue to breathe. My Uncle hired an in home nurse and kept my Aunt, on the mechanical ventilator, at home. She lived for years like this.
To make matters worse, my Uncle began a love affair with my Aunt's nurse. So not only was my Aunt trapped inside her body and able to move nothing more than her eyes for years, but she was then forced to watch as her husband "moved on."
This may sound like an extreme case. But ALS is a devastating disease, even when the sordid love affair isn't thrown into the mix. And I can't help but wonder if my Aunt might have taken her life by other means, much earlier, had she been give this choice legally.
I hope and pray that my Aunt Abbey rests in peace.
And so yes, I am in favor of physican-assisted suicide in certain, very carefully screened circumstances.
First of all, as I've written in prior postings, it is not uncommon for people facing end of life to at least consider taking their own life so as not to prolong a painful ending to their life. There are several fears that seem to bring this option into serious consideration:
1. fear of uncontrollable pain
2. fear of dependency on others
3. anxiety as to what happens after death
4. anxiety waiting for the "unknown" time when death will finally take you, without your control over its timing (fear of a lack of control - ties into #2).
I'm certain there are other issues that I haven't heard yet, but these four seem to be common themes.
For most people, when these fears are addressed directly the desire to end one's life early usually dissipiates. Some of the ways to address the above are by ensuring adequate pain control, setting up home aides to help with caretaking so as not to tax familial caregivers, providing spiritual support in whatever capacity that takes, and allowing the patient to maintain as much control as possible for as long as possible.
However, there are certain conditions and/or circumstances that seem to question whether physician assisted suicide might be a reasonable option.
My Aunt Abbey was a beautiful and eccentric woman. I remember sipping my parent's grasshoppers at her poolside; her vibrant, hearty laughter; her stripped blond hair, styled just so; her dark and cozy living room.
Aunt Abbey had saved up all of her left-over prescription pills throughout her entire life. She had a lifelong fear of becoming seriously ill to a degree that would incapacitate her. She decided that as soon as she knew she was going to die, she would take her own life.
The symptom that first presented itself, informing my Aunt's doctor that she had ALS (aka Lou Gehrig's disease) was her inability to swallow. Not only was she diagnosed with a disease that would take her life excruciatingly slowly, increasingly incapacitating her over a period of years, but her means of ending her life was taken with her first symptom. This disease progressively degenerates neurons, paralyzing you slowly as it spreads throughout your body, while keeping your mind completely intact. Talk about torture!
My Aunt filled out all of the appropriate paper work. She did not want mechanical ventilation. She wanted to die as soon as her lungs became paralyzed. As is usual, my Aunt listed her husband as her DPOA (Durable Power of Attorney). By signing a DPOA, you are giving your designated person the right for to make decisions for you should you become unable - mentally or physically - to make decisions for yourself. When my Aunt got to the point that she would die if not given mechanical ventilation, however, my Uncle was by then the DPOA. Instead of following my Aunt's request, he couldn't bear to let her die. She was intubated and forced to continue to breathe. My Uncle hired an in home nurse and kept my Aunt, on the mechanical ventilator, at home. She lived for years like this.
To make matters worse, my Uncle began a love affair with my Aunt's nurse. So not only was my Aunt trapped inside her body and able to move nothing more than her eyes for years, but she was then forced to watch as her husband "moved on."
This may sound like an extreme case. But ALS is a devastating disease, even when the sordid love affair isn't thrown into the mix. And I can't help but wonder if my Aunt might have taken her life by other means, much earlier, had she been give this choice legally.
I hope and pray that my Aunt Abbey rests in peace.
And so yes, I am in favor of physican-assisted suicide in certain, very carefully screened circumstances.
Monday, August 23, 2004
My Grandmother's Death
I was nine years old when my grandmother died. I remember my parents calling my sister Kay and I into my bedroom. The four of us crowded into a huddle in the middle of the carpet. I could tell by my parents' tones of voices and their expressions on their faces that this was very serious.
Mom: We have some very very sad news to tell you.
Dad: It's about your grandmother.
Mia: Is she okay?
Mom (crying quietly): She's okay right now, but she's going to go to heaven soon.
Kay: What do you mean?
Dad (his voice cracking): She's going to die soon.
My sister and I wailed. We adored our grandmother. We knew she'd been sick for awhile now, but hadn't expected this news. We weren't familiar with death. Dying was foreign, unknown and frightening. My parents held us tightly as we let the tears pour out.
When my grandmother died a few days later, we were at my Aunt Jo's house. All of the cousins huddled together on the floor and my Aunt Jo pulled us all into one large embrace with one of her amazing bear hugs. Aunt Jo, Kay and my three cousins were all in audible tears. Everyone was crying except for me. The shock and numbness I felt baffled me.
Riding in the car on our way to the funeral, my mother's sobs never stopped. I watched from the backseat as my father's silent cries made their way down his cheeks. Even more terrifying than my grandmother's death was the change it had caused on my family and my parents in specific. I had never seen my father cry before. I felt helpless. I felt invisible. My mother's grief was all-consuming. I wanted and needed them to guide me through the maze of emotions I was feeling. But they were too lost in their own grief to even acknowledge mine.
Today, recalling all of these memories, I suddenly wondered, Is part of my interest in helping families with death and dying still carried over from feeling so helpless in supporting my mother and my own family through the loss of my grandmother over twenty years ago? The silence around my grandmother - the rare reference to her name and the emotional outbursts on those rare occasions - suggest my family is still grieving. I have a lot more work to do.
Mom: We have some very very sad news to tell you.
Dad: It's about your grandmother.
Mia: Is she okay?
Mom (crying quietly): She's okay right now, but she's going to go to heaven soon.
Kay: What do you mean?
Dad (his voice cracking): She's going to die soon.
My sister and I wailed. We adored our grandmother. We knew she'd been sick for awhile now, but hadn't expected this news. We weren't familiar with death. Dying was foreign, unknown and frightening. My parents held us tightly as we let the tears pour out.
When my grandmother died a few days later, we were at my Aunt Jo's house. All of the cousins huddled together on the floor and my Aunt Jo pulled us all into one large embrace with one of her amazing bear hugs. Aunt Jo, Kay and my three cousins were all in audible tears. Everyone was crying except for me. The shock and numbness I felt baffled me.
Riding in the car on our way to the funeral, my mother's sobs never stopped. I watched from the backseat as my father's silent cries made their way down his cheeks. Even more terrifying than my grandmother's death was the change it had caused on my family and my parents in specific. I had never seen my father cry before. I felt helpless. I felt invisible. My mother's grief was all-consuming. I wanted and needed them to guide me through the maze of emotions I was feeling. But they were too lost in their own grief to even acknowledge mine.
Today, recalling all of these memories, I suddenly wondered, Is part of my interest in helping families with death and dying still carried over from feeling so helpless in supporting my mother and my own family through the loss of my grandmother over twenty years ago? The silence around my grandmother - the rare reference to her name and the emotional outbursts on those rare occasions - suggest my family is still grieving. I have a lot more work to do.
Friday, August 20, 2004
Support Hospice Nursing Now
YOUR SUPPORT FOR HOSPICE & PALLIATIVE CARE NURSING NEEDED
"The Board of Nurse Examiners for the State of Texas recently voted to change the rules and regulations relating to Nurse Education, Licensure and Practice preventing hospice and palliative care advanced practice nurses from obtaining recognition as a specialty in the State of Texas.
The change that has been proposed is currently posted on the Texas Register for your comment.
An invitation for comments has been made available to comment on-line or send a letter to Katherine Thomas, MN, RN, Executive Director, Board of Nurse Examiners, 333 Guadalupe, Suite 3-460, Austin TX 78701 before September 12, 2004
The proposed rule change requires that nurse practitioners may practice and hold a title only in the specialties of acute care adult, acute care pediatric, adult, family, gerontological, neonatal, pediatric, psychiatric/mental health and women's health. Furthermore, the rule change limits the clinical nurse specialist to adult health/medical-surgical, community health critical care, gerontological, pediatric and psychiatric/mental health. Education and certification in these specialties do not address the education needed for hospice and palliative care certification. End of life care, although the newest specialty, is very specialized and the population we serve deserve the highest quality care meeting the standards of the recently released Clinical Practice Guidelines for Quality Palliative Care as well as the long recognized Standards of Practice for Hospice Programs. If this proposed rule change becomes a reality, the Board of Nurse Examiners will continue to deny the need for this knowledge and skill thereby denying recognition to those who have achieved this knowledge through education, practice and experience. Others who achieve advanced practice education in adult, med-surg, family, psychiatric, etc would be deemed competent by the Texas Board of Nurse Examiners to provide hospice and palliative care on an advanced practice level. Please be aware that only 7 of the 13 board members attending the meeting voted in favor of this proposed rule change, one abstained and five voted in favor.
BACKGROUND RESULTING IN THIS RULE CHANGE
It is our belief that these proposed changes are in response to the National Council of State Board of Nursing's (NCSBN) APRN Advisory Panel's recommendation that advanced practice nurses must have a broad preparation. NCSBN considers hospice and palliative care to be a subspecialty. Since the breadth of death is 100%, it is hard for us to understand NCSBN's narrow interpretation of hospice and palliative care!! Providing hospice and palliative care demands an extensive knowledge of virtually all systems of the human body, all acute, chronic, and traumatic end stage disease processes, extensive pharmacology, and a complete understanding of the assessment and treatment of psychological and spiritual distress. Unlike former decades where hospice nurses cared for only cancer patients, hospice and palliative nurses now see nearly all medical conditions that lead to death, supporting the position that hospice and palliative nursing practice is not a small specialty, but rather a broad and expansive specialty that requires knowledge and skills to understand and assist dying people, regardless of their disease, location or level of acuity. Is it not broader than women's health or psychiatric/mental health?
WHAT CAN YOU DO?
1) GO TO http://www.sos.state.tx.us/texreg/archive/August132004/index.html as soon as possible to review the proposed change and offer your comments
2) A SECOND ALTERNATIVE IS TO OFFER YOUR COMMENTS BY LETTER AND SEND TO KATHERINE THOMAS by SEPTEMBER 12, 2004 (see address in the text above) Be sure to emphasize the impact this rule change will have on providing quality end of life care for the citizens of Texas.
3) ALERT OTHER NURSES, PATIENTS, DOCTORS, CONSUMERS, FAMILY MEMBERS TO RESPOND
4) Make your voice be heard - support your colleagues in Texas while also helping yourself since other states are beginning to consider this same NCSBN recommendation. YOU can make the difference!!
ACT NOW!"
-Hospice & Palliative Nurses Association
"The Board of Nurse Examiners for the State of Texas recently voted to change the rules and regulations relating to Nurse Education, Licensure and Practice preventing hospice and palliative care advanced practice nurses from obtaining recognition as a specialty in the State of Texas.
The change that has been proposed is currently posted on the Texas Register for your comment.
An invitation for comments has been made available to comment on-line or send a letter to Katherine Thomas, MN, RN, Executive Director, Board of Nurse Examiners, 333 Guadalupe, Suite 3-460, Austin TX 78701 before September 12, 2004
The proposed rule change requires that nurse practitioners may practice and hold a title only in the specialties of acute care adult, acute care pediatric, adult, family, gerontological, neonatal, pediatric, psychiatric/mental health and women's health. Furthermore, the rule change limits the clinical nurse specialist to adult health/medical-surgical, community health critical care, gerontological, pediatric and psychiatric/mental health. Education and certification in these specialties do not address the education needed for hospice and palliative care certification. End of life care, although the newest specialty, is very specialized and the population we serve deserve the highest quality care meeting the standards of the recently released Clinical Practice Guidelines for Quality Palliative Care as well as the long recognized Standards of Practice for Hospice Programs. If this proposed rule change becomes a reality, the Board of Nurse Examiners will continue to deny the need for this knowledge and skill thereby denying recognition to those who have achieved this knowledge through education, practice and experience. Others who achieve advanced practice education in adult, med-surg, family, psychiatric, etc would be deemed competent by the Texas Board of Nurse Examiners to provide hospice and palliative care on an advanced practice level. Please be aware that only 7 of the 13 board members attending the meeting voted in favor of this proposed rule change, one abstained and five voted in favor.
BACKGROUND RESULTING IN THIS RULE CHANGE
It is our belief that these proposed changes are in response to the National Council of State Board of Nursing's (NCSBN) APRN Advisory Panel's recommendation that advanced practice nurses must have a broad preparation. NCSBN considers hospice and palliative care to be a subspecialty. Since the breadth of death is 100%, it is hard for us to understand NCSBN's narrow interpretation of hospice and palliative care!! Providing hospice and palliative care demands an extensive knowledge of virtually all systems of the human body, all acute, chronic, and traumatic end stage disease processes, extensive pharmacology, and a complete understanding of the assessment and treatment of psychological and spiritual distress. Unlike former decades where hospice nurses cared for only cancer patients, hospice and palliative nurses now see nearly all medical conditions that lead to death, supporting the position that hospice and palliative nursing practice is not a small specialty, but rather a broad and expansive specialty that requires knowledge and skills to understand and assist dying people, regardless of their disease, location or level of acuity. Is it not broader than women's health or psychiatric/mental health?
WHAT CAN YOU DO?
1) GO TO http://www.sos.state.tx.us/texreg/archive/August132004/index.html as soon as possible to review the proposed change and offer your comments
2) A SECOND ALTERNATIVE IS TO OFFER YOUR COMMENTS BY LETTER AND SEND TO KATHERINE THOMAS by SEPTEMBER 12, 2004 (see address in the text above) Be sure to emphasize the impact this rule change will have on providing quality end of life care for the citizens of Texas.
3) ALERT OTHER NURSES, PATIENTS, DOCTORS, CONSUMERS, FAMILY MEMBERS TO RESPOND
4) Make your voice be heard - support your colleagues in Texas while also helping yourself since other states are beginning to consider this same NCSBN recommendation. YOU can make the difference!!
ACT NOW!"
-Hospice & Palliative Nurses Association
Thursday, August 19, 2004
Should We Let Her Know She's Dying?
My answer is yes, yes and yes.
I have worked with numerous families who feel they are doing a service to their loved one by hiding diagnoses from them.
"If she found out that she has lung cancer, she would go into a severe depression and never recover from it."
"If he finds out that he has pancreatic cancer, he will lose his mind."
"She's not strong enough to handle it."
"I think it is better that he not know."
Well, I have news for you. They know! Whenever nurses work with these types of famlies, the patients are often saying the same thing! "Please don't tell my family that I have cancer. They can't handle it." Everyone is trying to protect everyone else. And you know what the result is? Total lack of communication. Unnecessary isolation. Missed opportunities for making memorable connections between loved ones. I have yet to find a good reason to withhold this information from a patient.
I have worked with numerous families who feel they are doing a service to their loved one by hiding diagnoses from them.
"If she found out that she has lung cancer, she would go into a severe depression and never recover from it."
"If he finds out that he has pancreatic cancer, he will lose his mind."
"She's not strong enough to handle it."
"I think it is better that he not know."
Well, I have news for you. They know! Whenever nurses work with these types of famlies, the patients are often saying the same thing! "Please don't tell my family that I have cancer. They can't handle it." Everyone is trying to protect everyone else. And you know what the result is? Total lack of communication. Unnecessary isolation. Missed opportunities for making memorable connections between loved ones. I have yet to find a good reason to withhold this information from a patient.
Tuesday, August 17, 2004
When Will We Be Ready for Hospice?
Patients with terminal illnesses and their families are eventually faced with this decision. When do we stop trying to cure the disease? When will I be ready to turn to hospice? Some people view hospice as giving up hope and as throwing in the towel. In their minds, hospice equals death and the end. Sometimes people keep hoping and praying for a cure right up until death comes and takes them or their loved one whether they are ready or not. I do not make judgements against people who go this route. We are all in this life, on a journey, trying to figure things out. We are all doing the best we can with our given resources. And everyone makes different decisions for different reasons. I have been moved to tears by couples grappling with this decision. It is not an easy decision to make. No one wants to let go.
To these people, however, I try to explain a few things in order to help them make an informed decision:
1) No one is telling you that you must give up hope in order to start hospice. Some people graduate from hospice. Some people outlive all expectations and test results suddenly look different and they get discharged - still alive - from hospice.
2) Hospice doesn't equal death. Hospice means shifting focus away from cure and onto improving quality of life. If efforts to lengthen someone's life seem to be causing more detriment to the individual and to the family with a minimal expected return, the shift may seem natural (painful nevertheless, but appropriate) to refocus on comfort measures.
3) Suggesting hospice does not mean that you don't love your family or the loved one who is ill. You are not saying "I am ready to die" or "I am ready for you to die." Considering this option means that you accept that the Western medicine treatments that are currently available are not going to cure the disease and that you do not want to continue to suffer or to watch your loved one suffer.
Anyone who is expected to live six months or less is eligible for hospice. And the sooner hospice is initiated, the more both the person who is dying and the family will benefit. Many people continue to pursue potentially life-saving healing practices in complementary medicine such as Traditional Chinese Medicine (TCM), Qigong, guided imagery, acupuncture, etc. (See new Complementary Medicine links in my sidebar). By initiating hospice, however, you are agreeing to cease all Western medicine efforts focused on cure.
Honestly, I think we should all be in hospice in a certain sense. Our medical care should always have a strong focus on comfort and relief from pain and bothersome symptoms, a focus on mental health and emotional well-being.
To these people, however, I try to explain a few things in order to help them make an informed decision:
1) No one is telling you that you must give up hope in order to start hospice. Some people graduate from hospice. Some people outlive all expectations and test results suddenly look different and they get discharged - still alive - from hospice.
2) Hospice doesn't equal death. Hospice means shifting focus away from cure and onto improving quality of life. If efforts to lengthen someone's life seem to be causing more detriment to the individual and to the family with a minimal expected return, the shift may seem natural (painful nevertheless, but appropriate) to refocus on comfort measures.
3) Suggesting hospice does not mean that you don't love your family or the loved one who is ill. You are not saying "I am ready to die" or "I am ready for you to die." Considering this option means that you accept that the Western medicine treatments that are currently available are not going to cure the disease and that you do not want to continue to suffer or to watch your loved one suffer.
Anyone who is expected to live six months or less is eligible for hospice. And the sooner hospice is initiated, the more both the person who is dying and the family will benefit. Many people continue to pursue potentially life-saving healing practices in complementary medicine such as Traditional Chinese Medicine (TCM), Qigong, guided imagery, acupuncture, etc. (See new Complementary Medicine links in my sidebar). By initiating hospice, however, you are agreeing to cease all Western medicine efforts focused on cure.
Honestly, I think we should all be in hospice in a certain sense. Our medical care should always have a strong focus on comfort and relief from pain and bothersome symptoms, a focus on mental health and emotional well-being.
Monday, August 16, 2004
Tombstone Rubbings
While reorganizing my links, I came across this website about how to do tombstone rubbings. I am fascinated. Anyone game for making a fieldtrip to a cemetary with me to try this out?
Sunday, August 15, 2004
Grief as Ocean
It is not surprising that the ocean is often used as a metaphor for grief. The way sadness pulls out like the tide and you think you have moved on. Then all of a sudden, the tides change and a sunami wave of sorrow washes over you. I crashed to my knees in the shower when the weight of the wave hit me yesterday. The shower head plummeting my back like ocean spray.
Sometimes a song - or even just a thought that seemed innocent enough at first - triggers the grief. Like a land mine hidden in a layer of sun bleached grass, I am thrown to the ground.
Sometimes a song - or even just a thought that seemed innocent enough at first - triggers the grief. Like a land mine hidden in a layer of sun bleached grass, I am thrown to the ground.
Saturday, August 14, 2004
Supporting a Friend through Grief
People who are grieving may be reluctant to ask for help, even after receiving card after card stating, "Please let me know if there is anything that I can do." So instead of simply leaving things with that general offer, here are some specific things you can do to support a friend through grief:
1. Visit, phone, write or send flowers. Even if you feel like so much time has passed that it would now be awkward, don't hesitate to get in touch. Grief can last four to five years. It's never too late to offer condolances. In fact, since most of the cards arrive immediately, your friend may be in even more need of support when the condolances have trickled to a stop and yet the grief has continued on. An encouraging note, in particular, can be read and re-read whenever your friend feels particularly down.
2. Listen. Allow your friend to express whatever emotions arise. Avoid negating those emotions with cliches and instead respond with a simple "I'm sorry." Let your friend cry. Tears are a normal response to loss and are healing.
3. Bring a meal. Meals are welcome anytime - from the time of death until months after.
4. Offer to clean your friend's house. And will you clean mine while you're at it? ;-)
5. Be affectionate. Offer hugs. Give your friend inspirational music or writing.
6. Make plans to do things together - movies, dinner, or other fun events that will be distracting. Sign up to take a class together.
7. Offer to babysit.
8. Talk about the loss. Let your friend know that you are someone they can talk to about their feelings.
9. Spend time together. Visit often. Accept silence during your visits; your simple presence may be comforting enough.
10. Offer any special skills you have - with insurance forms, taxes or any other skills.
If your friend turns you down on any of these offers, don't give up. Try another one.
(Suggestions inspired by Victor Parachin's article in the June 1996 issue of "The Director," magazine distributed by the National Funeral Director's Association.)
1. Visit, phone, write or send flowers. Even if you feel like so much time has passed that it would now be awkward, don't hesitate to get in touch. Grief can last four to five years. It's never too late to offer condolances. In fact, since most of the cards arrive immediately, your friend may be in even more need of support when the condolances have trickled to a stop and yet the grief has continued on. An encouraging note, in particular, can be read and re-read whenever your friend feels particularly down.
2. Listen. Allow your friend to express whatever emotions arise. Avoid negating those emotions with cliches and instead respond with a simple "I'm sorry." Let your friend cry. Tears are a normal response to loss and are healing.
3. Bring a meal. Meals are welcome anytime - from the time of death until months after.
4. Offer to clean your friend's house. And will you clean mine while you're at it? ;-)
5. Be affectionate. Offer hugs. Give your friend inspirational music or writing.
6. Make plans to do things together - movies, dinner, or other fun events that will be distracting. Sign up to take a class together.
7. Offer to babysit.
8. Talk about the loss. Let your friend know that you are someone they can talk to about their feelings.
9. Spend time together. Visit often. Accept silence during your visits; your simple presence may be comforting enough.
10. Offer any special skills you have - with insurance forms, taxes or any other skills.
If your friend turns you down on any of these offers, don't give up. Try another one.
(Suggestions inspired by Victor Parachin's article in the June 1996 issue of "The Director," magazine distributed by the National Funeral Director's Association.)
Friday, August 13, 2004
Book Review: Final Gifts
FINAL GIFTS:
Understanding the Special Awareness, Needs and Communications of the Dying
by Maggie Callanan and Patricia Kelley
This book, by two hospice nurses, is a beautifully written collection of stories about the sometimes cryptic communications people who are dying try to tell their loved ones. Towards the end of life, people can appear to be somewhat confused. However, even in this seemingly altered mental state, they may be trying to convey important messages. In addition to being moved by each and every story in the book, I gleaned new insight about the needs of people in their last days of life.
For anyone who loves someone who is dying or who works with people at the end of life, this is a must read. The chapters stand alone and can thus be read in any order and at any pace. The last chapter gives specific tips for maintaining authentic, open and loving dialogue with family members or patients who are getting ready to let go.
Highly recommended.
Understanding the Special Awareness, Needs and Communications of the Dying
by Maggie Callanan and Patricia Kelley
This book, by two hospice nurses, is a beautifully written collection of stories about the sometimes cryptic communications people who are dying try to tell their loved ones. Towards the end of life, people can appear to be somewhat confused. However, even in this seemingly altered mental state, they may be trying to convey important messages. In addition to being moved by each and every story in the book, I gleaned new insight about the needs of people in their last days of life.
For anyone who loves someone who is dying or who works with people at the end of life, this is a must read. The chapters stand alone and can thus be read in any order and at any pace. The last chapter gives specific tips for maintaining authentic, open and loving dialogue with family members or patients who are getting ready to let go.
Highly recommended.
Thursday, August 12, 2004
What's Your Favorite Quote about Death?
Here are a couple of mine:
"Death is more universal than life; everyone dies but not everyone lives." - A. Sachs
"Life is eternal, and love is immortal and death is only a horizon, and a horizon is nothing save the limit of our sight."
- Rossiter Worthington Raymond 1840-1918
"Death is more universal than life; everyone dies but not everyone lives." - A. Sachs
"Life is eternal, and love is immortal and death is only a horizon, and a horizon is nothing save the limit of our sight."
- Rossiter Worthington Raymond 1840-1918
Wednesday, August 11, 2004
Decay
A few days ago, I wrote about a little lamb who died in my arms. But I didn't finish the story.
After the lamb died, one of my fellow farmhands suggested we place its body in the empty corncrib and watch the decay process as a learning experience. Every morning, each of us would make a quiet, solo trip over to the corncrib to check on what was left of the little lamb. Flies quickly laid eggs and maggots quickly devoured the flesh. By the end of the week, a few tufts of soft white wool were still left around the raw bones.
Ever since that experience, I have been fairly certain that I want to be cremated. I know that being eaten by maggots is a natural process, the natural order of things, but somehow I have never truly come to terms with it.
Perhaps if I came to a place where I had more appreciation for the beauty of bacteria, that might help as well. Unlike out in the open air of the farm, my body is far less likely to encounter flies upon its demise.
Of course, I am very thankful for the bacteria in my gut that help me digest food and ensure that I absorb vitamin K and some of the B vitamins. And as a woman, I am certainly grateful to the acidophilus bacteria in yogurt that keep yeast flora at bay. In addition, new research suggests that lactobacillus bacteria may help fight the flu.
So I guess I could look at the inevitable decay of my body as a thanksgiving feast to the bacteria that make my life possible.
After the lamb died, one of my fellow farmhands suggested we place its body in the empty corncrib and watch the decay process as a learning experience. Every morning, each of us would make a quiet, solo trip over to the corncrib to check on what was left of the little lamb. Flies quickly laid eggs and maggots quickly devoured the flesh. By the end of the week, a few tufts of soft white wool were still left around the raw bones.
Ever since that experience, I have been fairly certain that I want to be cremated. I know that being eaten by maggots is a natural process, the natural order of things, but somehow I have never truly come to terms with it.
Perhaps if I came to a place where I had more appreciation for the beauty of bacteria, that might help as well. Unlike out in the open air of the farm, my body is far less likely to encounter flies upon its demise.
Of course, I am very thankful for the bacteria in my gut that help me digest food and ensure that I absorb vitamin K and some of the B vitamins. And as a woman, I am certainly grateful to the acidophilus bacteria in yogurt that keep yeast flora at bay. In addition, new research suggests that lactobacillus bacteria may help fight the flu.
So I guess I could look at the inevitable decay of my body as a thanksgiving feast to the bacteria that make my life possible.
Tuesday, August 10, 2004
Do You Believe in Ghosts?
There are so many movie and television depictions of ghosts - from celluloid images of Whoopie Goldberg becoming possessed by a dead white man to "Crossing Over" and Sylvia Browne's numerous appearances on talk shows. But are ghosts real? What do you think?
Monday, August 09, 2004
Six Feet Under Addict
Hello. My name is Mia. And I'm a "Six Feet Under" addict. I admit it. Though I guess it's no surprise that I would love that show. I'm not the type to ever go so far with a television program as to read magazine articles or even puruse websites or chatrooms. But I am addicted to the degree that I could ever be addicted to a tv program.
Okay, the things I love about Six Feet Under:
-the show normalizes death publicly
-the show finds humor around death and dying
-the characters can be a bit profound at times, yet they're never dry nor dull
I would love for my blog to be all of that at once. But that is a very distant and difficult goal to aspire to. So in the meantime, I will keep renting the latest episode of Six Feet Under on DVD.
Okay, the things I love about Six Feet Under:
-the show normalizes death publicly
-the show finds humor around death and dying
-the characters can be a bit profound at times, yet they're never dry nor dull
I would love for my blog to be all of that at once. But that is a very distant and difficult goal to aspire to. So in the meantime, I will keep renting the latest episode of Six Feet Under on DVD.
Sunday, August 08, 2004
Why Am I Here?
This is a question many people wait until they know they are dying before they consider. But many of the tasks of dying, including this one, can help us make our lives more meaningful on an every day basis.
Some of the questions that help people find meaning in their life:
- What "one noble act" that I have done brings a sense of fulfillment to my life?
- What has this life been all about?
- What have I learned in my life?
- What have I done with my life?
- What have I given to others and what have I received from others?
- Have I live according to my beliefs and priorities?
- What are my priorities now?
- What have been my most cherished moments in this life so far -- when I brought dignity upon myself, when I took a stand, when I experienced love, when I opened myself to others and to the world?
What brings meaning to your life?
Some of the questions that help people find meaning in their life:
- What "one noble act" that I have done brings a sense of fulfillment to my life?
- What has this life been all about?
- What have I learned in my life?
- What have I done with my life?
- What have I given to others and what have I received from others?
- Have I live according to my beliefs and priorities?
- What are my priorities now?
- What have been my most cherished moments in this life so far -- when I brought dignity upon myself, when I took a stand, when I experienced love, when I opened myself to others and to the world?
What brings meaning to your life?
Saturday, August 07, 2004
The Four Things
I really need to create a list of links on this page. There are so many excellent resources out there for supporting people and families through end of life. And so many of them include tips that we could all use in our daily lives. For instance, this one: The Four Things That Matter Most
This site is based on a book by Ira Byock, MD. I haven't read the book, but have definitely heard references to these four phrases before. In hospice work, when not referencing the four tasks of living and dying, these four phrases are often referred to:
1. Please forgive me.
2. I forgive you.
3. Thank you.
4. I love you.
The phrases kind of overlap with the four tasks (which include forgiveness and acknowledging successes).
"Even as people confront death (their own or others'), they can reach out to express love, gratitude and forgiveness. When they do, they consistently find that they - and everyone involved - are transformed for the rest of their life, whether those lives last for decades or just days."
This site is based on a book by Ira Byock, MD. I haven't read the book, but have definitely heard references to these four phrases before. In hospice work, when not referencing the four tasks of living and dying, these four phrases are often referred to:
1. Please forgive me.
2. I forgive you.
3. Thank you.
4. I love you.
The phrases kind of overlap with the four tasks (which include forgiveness and acknowledging successes).
"Even as people confront death (their own or others'), they can reach out to express love, gratitude and forgiveness. When they do, they consistently find that they - and everyone involved - are transformed for the rest of their life, whether those lives last for decades or just days."
Sunday, August 01, 2004
Suckling not Suffering
My friend Cat and I worked together on a sheep farm one summer during college. She was visiting this evening after not having seen each other in over ten years, so I pulled out my old photo album from our days together on the farm. As we flipped through pages of photos, one image jumped out at me.
I was sitting on the grass with a small lamb, holding a bottle of milk to his mouth, my other hand gently cupping his chin. If you have never seen a lamb live, you'll just have to believe me; they are incredibly adorable creatures. They are like walking stuffed animals, following their mothers in pairs or alone. Their soft fuzzy furr much brighter white than their mother's. They have long fuzzy tails and little parts on either side of their head where their horns will grow in. And they make the sweetest sounds. Instead of calling out "Baaahh" like their mothers, they call out a higher pitched, child-like "Maaahh."
This lamb's mother, however, had rejected him after birth. Several hours had passed before we'd found him laying down out in the pasture. Lambs must be fed within the first few hours after being born. Without his mother's milk to sustain him, he was barely holding onto life.
I cradled the lamb over my right thigh and talked sweetly to him, trying to encourage him to suckle from the bottle. He made a few half-hearted attempts to reach out for sustenance. But then he stopped. We had found him too late. He died in my arms.
We stopped to pause at the photo and recalled the events around it. Cat smiled sweetly and said, "That was your first experience caring for a life as it left this world."
I've often thought that my time on the sheep farm opened me to considering working in a medical profession. (We also gave injections and attended to wounds). But it wasn't until Cat said that that I realized how deeply those experiences had changed me.
Comforting that lamb as he struggled between staying in this world and leaving it left me with a sweet sorrow. I was mournful that I had not been able to save him. But despite being rejected by his mother, I hoped that the lamb was able to leave this world feeling cared for and surrounded in love.
I was sitting on the grass with a small lamb, holding a bottle of milk to his mouth, my other hand gently cupping his chin. If you have never seen a lamb live, you'll just have to believe me; they are incredibly adorable creatures. They are like walking stuffed animals, following their mothers in pairs or alone. Their soft fuzzy furr much brighter white than their mother's. They have long fuzzy tails and little parts on either side of their head where their horns will grow in. And they make the sweetest sounds. Instead of calling out "Baaahh" like their mothers, they call out a higher pitched, child-like "Maaahh."
This lamb's mother, however, had rejected him after birth. Several hours had passed before we'd found him laying down out in the pasture. Lambs must be fed within the first few hours after being born. Without his mother's milk to sustain him, he was barely holding onto life.
I cradled the lamb over my right thigh and talked sweetly to him, trying to encourage him to suckle from the bottle. He made a few half-hearted attempts to reach out for sustenance. But then he stopped. We had found him too late. He died in my arms.
We stopped to pause at the photo and recalled the events around it. Cat smiled sweetly and said, "That was your first experience caring for a life as it left this world."
I've often thought that my time on the sheep farm opened me to considering working in a medical profession. (We also gave injections and attended to wounds). But it wasn't until Cat said that that I realized how deeply those experiences had changed me.
Comforting that lamb as he struggled between staying in this world and leaving it left me with a sweet sorrow. I was mournful that I had not been able to save him. But despite being rejected by his mother, I hoped that the lamb was able to leave this world feeling cared for and surrounded in love.
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