The following ethical scenario was proposed by reader JP.
As is custom, please read the scenario, share your thoughts or recommendations in the comments section and in a few days I will post a follow-up detailing the actual outcome in a related scenario.
Ms. Baker is a 84 year old woman with end-stage renal disease. She has been dependent on dialysis for the past ten years. She is currently in the hospital in the intensive care unit for sepsis (a bacterial infection in her blood). She also has a number of other co-morbidities including COPD (chronic obstructive pulmonary disease) and coronary artery disease.
When you walk into the room, the dialysis nurse pulls up to the bedside with the dialysis machine. As it appears, Ms. Baker tells you, "I am so miserable. It is so unfair that I have been so sick. Do you know the meaning of misery?"
The notes in her chart say that the family and the patient have decided on a DNR (do not resucitate) code status and have been made aware of her poor prognosis. You notice on the monitor that Ms. Baker's blood pressure is only 84/43. This is a very low pressure and the dialysis will likely drop it lower.
As the health care provider, you accept the responsibility for ensuring Ms. Baker is aware of her options. Accordingly, you say, "Ms. Baker, you can refuse dialysis at any time. It's actually a very peaceful way to go. You just fall asleep and don't wake up again."
Ms. Baker looks contemplative and asks, "Is that so?"
You assure her it is.
Ms. Baker looks thoughtful for a moment more. "Well, I want dialysis today."
When you leave the bedside, you search out the patient's children. When you find them, you explain to them the converation you had with the patient and why - she seemed miserable; her prognosis (as they know) is very poor and she should understand what her options are. The family is very angry that you have had this conversation with their mother and go so far as to tell you never to visit the patient again.
Some questions for your consideration:
1. Should patients be informed of their options?
2. Should families have the right to withold information from a patient?
3. How might you handle this situation from here?
Wednesday, April 26, 2006
Saturday, April 22, 2006
Symptomatology: Malodorous Wounds
I have been slowly making my way through the symptoms experienced at the end-of-life. The next symptom I would like to address is the malodorous wound.
People may have malodorous wounds for various reasons throughout their life. However, there are certain wounds seen more often at the end of life. Some of the malodorous wounds seen at the end of life include bedsores and fungating breast cancer lesions. The odor is caused by anaerobic bacteria in necrotic (decaying) tissue, which release volatile fatty acids as a metabolic by-product.
The odor can impact the quality of the patient's life and may lead to social withdrawal, embarassment, shame, and psychological distress.
Some possible interventions for managing these wounds include:
-Cleanse the wound with water or normal saline.
-Metrogel 1% applied to breast cancer lesion daily and covered with an occlusive dressing (such as vaseline gauze). Metronidazole (the active ingredient in Metro-gel) may also be taken orally. The oral form is less expensive, but the few studies that have been performed have shown marked improvement in odor with its use.
-activated charcoal / odor-absorbing dressings. These dressings should be changed daily or more often if the odor becomes noticeable before the next dressing change is due.
-Peppermint oil - many pharmacies carry this oil. You can place gauze in the top with the lid off and it works as an air deodorizer. Peppermint oil is a much more tolerable air freshener than most air deodorizers. Do NOT apply peppermint oil directly to the wound. You can also apply peppermint oil to a wash cloth and drape over a fan or air conditioning vent. Peppermint oil should not be used alone, as it may become associated with the smell of the wound and lose effectiveness.
-Palliative radiation is another option and may help to heal the wound.
Although this post focuses on odor, always remember to treat the pain associated with any wounds.
See Prodigy Guidance for additional information on malodorous wounds.
People may have malodorous wounds for various reasons throughout their life. However, there are certain wounds seen more often at the end of life. Some of the malodorous wounds seen at the end of life include bedsores and fungating breast cancer lesions. The odor is caused by anaerobic bacteria in necrotic (decaying) tissue, which release volatile fatty acids as a metabolic by-product.
The odor can impact the quality of the patient's life and may lead to social withdrawal, embarassment, shame, and psychological distress.
Some possible interventions for managing these wounds include:
-Cleanse the wound with water or normal saline.
-Metrogel 1% applied to breast cancer lesion daily and covered with an occlusive dressing (such as vaseline gauze). Metronidazole (the active ingredient in Metro-gel) may also be taken orally. The oral form is less expensive, but the few studies that have been performed have shown marked improvement in odor with its use.
-activated charcoal / odor-absorbing dressings. These dressings should be changed daily or more often if the odor becomes noticeable before the next dressing change is due.
-Peppermint oil - many pharmacies carry this oil. You can place gauze in the top with the lid off and it works as an air deodorizer. Peppermint oil is a much more tolerable air freshener than most air deodorizers. Do NOT apply peppermint oil directly to the wound. You can also apply peppermint oil to a wash cloth and drape over a fan or air conditioning vent. Peppermint oil should not be used alone, as it may become associated with the smell of the wound and lose effectiveness.
-Palliative radiation is another option and may help to heal the wound.
Although this post focuses on odor, always remember to treat the pain associated with any wounds.
See Prodigy Guidance for additional information on malodorous wounds.
Wednesday, March 29, 2006
Origins with Death
Since my breakup, I have moved into a new apartment. As I was unpacking my belongings, I came across some old books that I'd been shuttling around with me since high school. One of them was "Wipe Your Face, You Just Swallowed My Soul" by Hugh Prather.
Hugh Prather had a large influence on me during my mid to late adolescence. Not that his writing is all about death. He mostly focuses on reminding us to live in the now. The following comes from his book "Notes to Myself."
"She may die before morning. But I have been with her for four years. Four years. There is no way I could feel cheated if I didn't have her for another day. I didn't deserve her for one minute, God knows.
"And I may die before morning.
"What I must do is die now. I must accept the justice of death and the injustice of life. I have lived a good life - longer than many, better than most. Tony died when he was twenty. I have had thirty-two years. I couldn't ask for another day. What did I do to deserve birth? It was a gift. I am me - that is a miracle. I had no right to a single minute. Some are given a single hour. And yet, I have had thirty-two years.
"Few can choose when they will die. I choose to accept death now. As of this moment, I give up my "right" to live. And I give up my "right" to her life.
"But it's morning. I have been given another day. Another day to hear and read and smell and walk and love and glory. I am alive for another day.
"I think of those who aren't."
Hugh Prather had a large influence on me during my mid to late adolescence. Not that his writing is all about death. He mostly focuses on reminding us to live in the now. The following comes from his book "Notes to Myself."
"She may die before morning. But I have been with her for four years. Four years. There is no way I could feel cheated if I didn't have her for another day. I didn't deserve her for one minute, God knows.
"And I may die before morning.
"What I must do is die now. I must accept the justice of death and the injustice of life. I have lived a good life - longer than many, better than most. Tony died when he was twenty. I have had thirty-two years. I couldn't ask for another day. What did I do to deserve birth? It was a gift. I am me - that is a miracle. I had no right to a single minute. Some are given a single hour. And yet, I have had thirty-two years.
"Few can choose when they will die. I choose to accept death now. As of this moment, I give up my "right" to live. And I give up my "right" to her life.
"But it's morning. I have been given another day. Another day to hear and read and smell and walk and love and glory. I am alive for another day.
"I think of those who aren't."
Tuesday, March 28, 2006
Your Truth: "I Want to Call My Wife." Part 2
Your differing answers to this dilemma suggest that there isn't one right answer, but I will offer my thoughts and experience.
Death is an expected outcome in hospice and palliative care, therefore lawsuits over unrightful death are unlikely. However, I believe that the media's attention to the need for apologies in the light of medical malpractice may be extended to "mistakes" such as the one described in my previous post.
The Lancet recently published some data from research being done on the disclosure of medical errors:
"...patients were asked what they would have wanted to hear at the time of an incident. What they described was wanting to learn what happened, that someone would accept responsibility, that steps were being taken to prevent future similar incidents, and they wanted an apology."
Having heard that and having a personal policy of being honest and open, I decided to tell this patient's wife the truth.
When she arrived to the patient's bedside, I sat down beside her. I said, "I was there when your husband died. I want you to know that it was a very peaceful death."
I then continued, "I also want to tell you that last night, your husband asked the night nurse if he could call you. He seemed confused. The nurse explained to him that it was 2am and assured him we'd call you in the morning. He was doing so well yesterday, we were not expecting him to die so soon..."
I put my hand to my heart and tears filled my eyes (I was very sincerely distressed by this course of events).
I continued, "And it breaks my heart that we didn't call you. I'm so sorry."
The apology was sincere and heart-felt. Did this leave her anxiously wondering what her husband had wanted to say? Or did it offer her some comfort that he was thinking of her in his last hours? I can't say.
But in my heart, this disclosure felt like the right decision. She did not express any anger; instead, she seemed relaxed and comforted by my honest admission of our fault.
Death is an expected outcome in hospice and palliative care, therefore lawsuits over unrightful death are unlikely. However, I believe that the media's attention to the need for apologies in the light of medical malpractice may be extended to "mistakes" such as the one described in my previous post.
The Lancet recently published some data from research being done on the disclosure of medical errors:
"...patients were asked what they would have wanted to hear at the time of an incident. What they described was wanting to learn what happened, that someone would accept responsibility, that steps were being taken to prevent future similar incidents, and they wanted an apology."
Having heard that and having a personal policy of being honest and open, I decided to tell this patient's wife the truth.
When she arrived to the patient's bedside, I sat down beside her. I said, "I was there when your husband died. I want you to know that it was a very peaceful death."
I then continued, "I also want to tell you that last night, your husband asked the night nurse if he could call you. He seemed confused. The nurse explained to him that it was 2am and assured him we'd call you in the morning. He was doing so well yesterday, we were not expecting him to die so soon..."
I put my hand to my heart and tears filled my eyes (I was very sincerely distressed by this course of events).
I continued, "And it breaks my heart that we didn't call you. I'm so sorry."
The apology was sincere and heart-felt. Did this leave her anxiously wondering what her husband had wanted to say? Or did it offer her some comfort that he was thinking of her in his last hours? I can't say.
But in my heart, this disclosure felt like the right decision. She did not express any anger; instead, she seemed relaxed and comforted by my honest admission of our fault.
Friday, March 24, 2006
Your Truth: "I Want to Call My Wife."
Today I'm bringing back my old feature - the "Your Truth" series. For those of you new to my site... In this post, I will describe a scenario and ask how you would proceed.
Mr. Jameson is an 89 year-old man with congestive heart failure. He is on your palliative care unit or in your hospice for end-of-life care.
You are the day nurse coming onto shift. The night nurse tells you that during her shift, Mr. Jameson had woken up at 2am, asking to call his wife. She tells you that she had explained to him that it was the middle of the night and that he could call in the morning. She asks you to help him make the call this morning.
After report, you go to Mr. Jameson's room. You discover he is actively dying, and in fact within minutes of death. You use the phone at the bedside to call his wife, but she doesn't answer, because she is probably on her way to the hospital for her regular morning visit. You stay at the bedside with Mr. Jameson for the next few minutes and are present with him as he dies.
You find a colleague to process what has just happened. She asks, "Are you going to tell his wife that he wanted to call but that we didn't help him to make that phone call?"
What do you tell your colleague and what do you do?
As usual, please share your thoughts and then I will share what I have done in a similar circumstance.
See part 2.
Mr. Jameson is an 89 year-old man with congestive heart failure. He is on your palliative care unit or in your hospice for end-of-life care.
You are the day nurse coming onto shift. The night nurse tells you that during her shift, Mr. Jameson had woken up at 2am, asking to call his wife. She tells you that she had explained to him that it was the middle of the night and that he could call in the morning. She asks you to help him make the call this morning.
After report, you go to Mr. Jameson's room. You discover he is actively dying, and in fact within minutes of death. You use the phone at the bedside to call his wife, but she doesn't answer, because she is probably on her way to the hospital for her regular morning visit. You stay at the bedside with Mr. Jameson for the next few minutes and are present with him as he dies.
You find a colleague to process what has just happened. She asks, "Are you going to tell his wife that he wanted to call but that we didn't help him to make that phone call?"
What do you tell your colleague and what do you do?
As usual, please share your thoughts and then I will share what I have done in a similar circumstance.
See part 2.
Wednesday, March 22, 2006
Back in the Blogger Saddle
As the old adage suggests, it's time to get back in the saddle - with this site and with my schoolwork. Today, I am sitting in the library, working on my Master's Thesis, which is on - yes - death rattle. It's funny. I've been researching this topic since I wrote that old posting and I'm almost embarassed by how little I knew back then. The professor who is helping me with my dissertation is encouraging me to get my writing published in a nursing journal when I am finished and wants me to stay on for my PhD as there is huge gap in research on this topic. I would love to get the writing published, though I'll have to think long and hard about the PhD. I've been in school at least part-time for 8 years (well, with one year off in the middle somewhere). But I am so very ready for a break. And after that? Well, I may just be done with school for the time being. We'll see.
Most of my research until yesterday had been done on-line. (Medline has been a god-send). The few hard-copy books or articles I'd read had all been handed to me by mentors. So it's kind of novel and fun to sit in a library. There is something almost romantic about wandering down the aisles of books, flipping through their dusty pages, sitting at a public desk - free from all of the clutter and computer gear on my desk at home. But of course, there is also some discomfort - in the unfamiliarity of this environ and from my dust allergy! So I have retreated to the more familiar confines of the computer lab for the past hour.
Thank you all so very much for your kind words in light of my most recent loss - my divorce, that is. You all are the best! I have so very much appreciated the comments and emails. And thanks for coming back, even with the long periods of silence.
I'm hoping writing my master's thesis will not monopolize my time too much and that I will be able to write more frequently than I have been writing. I will graduate at the beginning of June (God willing - that I finish my thesis so I can graduate) and after that, I will have significantly more time for posting.
Best wishes to you all!
Most of my research until yesterday had been done on-line. (Medline has been a god-send). The few hard-copy books or articles I'd read had all been handed to me by mentors. So it's kind of novel and fun to sit in a library. There is something almost romantic about wandering down the aisles of books, flipping through their dusty pages, sitting at a public desk - free from all of the clutter and computer gear on my desk at home. But of course, there is also some discomfort - in the unfamiliarity of this environ and from my dust allergy! So I have retreated to the more familiar confines of the computer lab for the past hour.
Thank you all so very much for your kind words in light of my most recent loss - my divorce, that is. You all are the best! I have so very much appreciated the comments and emails. And thanks for coming back, even with the long periods of silence.
I'm hoping writing my master's thesis will not monopolize my time too much and that I will be able to write more frequently than I have been writing. I will graduate at the beginning of June (God willing - that I finish my thesis so I can graduate) and after that, I will have significantly more time for posting.
Best wishes to you all!
Saturday, March 11, 2006
Grief
I'm sorry for the silence.
Twenty-eight days ago, my partner and I split up. This is essentially a divorce, given the fact that we have lived together for over nine years, our bank and credit card accounts are all joint, she's on my health insurance plan, and we're registered as domestic partners.
That said... I've hesitated to write about this on this blog. Partly, it is honestly out of a resistance to sharing more of my grief in this space. This blog was developed to explore my personal and professional experiences with death and dying. And while, yes, that includes grief, this past year has provided me with more than my share of grief. First my grandmother died a year ago this past week; my aunt died shortly thereafter; then my grandmother's cat died recently and now I'm in the midst of a divorce.
Surprisingly, I am still standing tall despite the abundance of loss in my life.
But I feared weighing this blog down with yet more tales of my personal losses.
I have been rather anxious to refocus this space on my academic growth pertaining to the end-of-life process. But alas, life has other plans in store for me. :-)
Meanwhile, since I'm on the subject of grief, I thought I would share a link my dear friend Jenny emailed to me. This is for a Grief Retreat in Las Alpujarras, Andalucia, Spain. I will be taking a course on grief starting in April - it will be my final elective as I finish up my Master's degree. Though I have to say - a retreat in Spain carries a little more appeal than the lecture-based class I'll be attending in the States. ;-) But in case any of you are interested...
Twenty-eight days ago, my partner and I split up. This is essentially a divorce, given the fact that we have lived together for over nine years, our bank and credit card accounts are all joint, she's on my health insurance plan, and we're registered as domestic partners.
That said... I've hesitated to write about this on this blog. Partly, it is honestly out of a resistance to sharing more of my grief in this space. This blog was developed to explore my personal and professional experiences with death and dying. And while, yes, that includes grief, this past year has provided me with more than my share of grief. First my grandmother died a year ago this past week; my aunt died shortly thereafter; then my grandmother's cat died recently and now I'm in the midst of a divorce.
Surprisingly, I am still standing tall despite the abundance of loss in my life.
But I feared weighing this blog down with yet more tales of my personal losses.
I have been rather anxious to refocus this space on my academic growth pertaining to the end-of-life process. But alas, life has other plans in store for me. :-)
Meanwhile, since I'm on the subject of grief, I thought I would share a link my dear friend Jenny emailed to me. This is for a Grief Retreat in Las Alpujarras, Andalucia, Spain. I will be taking a course on grief starting in April - it will be my final elective as I finish up my Master's degree. Though I have to say - a retreat in Spain carries a little more appeal than the lecture-based class I'll be attending in the States. ;-) But in case any of you are interested...
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