Showing posts with label nursing home. Show all posts
Showing posts with label nursing home. Show all posts
Friday, November 1, 2019
No one should ever be “put” in a nursing home. You might agree with this statement because you don’t like nursing homes, but that is not what I’m saying. The word “put” is offensive when you are describing a person, unless you are talking about putting a 3 year old in the time out corner because he colored on the walls.
I would like to make the argument that no adult wants to be ‘put’ anywhere. You put dishes away, you do not put people away. When we are facing a situation in which the care needs exceed the family member’s ability, there are times where the best option is for the elder to move to a safer environment.
Let’s look at these two scenarios:
Daughter puts mom in a facility because mom is too much of a burden for daughter to take care of at home.
Or
Mom moved to a new community in which there were nurses who could take care of her health care needs. There are chefs who make her meals and caretakers who help her with her activities of daily living. She has opportunities to make new friends, play bingo, listen to music, and arrange flowers. Daughter’s time with mom can be spent sharing memories, watching movies and working on jigsaw puzzles together.
Same scenario. Which one feels better to you?
We do not want to say to our loved one, “You are too much for me.”
What we want to say is, “I want you to have the best care possible and I believe this choice will be better for both of us. I love you and I will continue to spend time with you.”
I should know. I was the daughter. I was an only child in my late twenties when my mom’s sister died. My aunt had lived near my mom and checked in on her daily. My mom was in declining in health and not really doing the best job caring for herself. She wrecked her car and wasn’t eating well. And suddenly I was the one responsible for her and I lived 90 minutes away. I was still working full time and tried to take care of things long distance, but I didn’t feel it was working. There was no end in sight either - though she was declining, she wasn’t terminally ill. After touring seven facilities, I found one that I liked and brought her to see it. She liked it and moved to an assisted living facility in my city that would be able to care for her until the end of her life.
As it turned out, it was the best decision I could have made. The facility staff welcomed her with open arms and she thrived. She lived there six years and was the happiest I had known her my whole life. During this time my mom and I even became closer than we ever had before.
There is no happy place. Happiness is an attitude.
We’re not supposed to have favorites in hospice care, but a hospice patient who was on service for a couple of years just recently died. I’m really going to miss her. Every time I saw her she was always smiling and expressing gratitude. She was the happiest person I had ever seen in a facility, including my mom. She dressed to the nines with all of her bracelets and necklaces and gushed about the staff, the activities and even the food. As you can imagine, when facility staff were giving tours, they always introduced her to the visitors. This resident also had very attentive staff because she was such a pleasure to be around. Her joy for life was contagious.Yes, a move to a nursing home is hard, but most patients adjust. In my experience, those who don’t adjust are likely to be unhappy in any setting. There are residents who don’t leave their room at the facility – but I bet you they never left their house either.
One final story. A patient who had lived at home ended up moving to a facility due to increased care needs. I visited her a week after she had moved and I personally felt sad that she didn’t have pictures or personal items. She, however, looked around the room devoid of belongings and said, “maybe this is how things are supposed to be. Maybe we don’t need a lot of stuff.” I had no idea she used to be a hoarder. She didn’t know it, but she was embracing the new minimalist trend.We decorate rooms and put pictures on walls at the nursing home because we are the ones who are still attached to belongings and things. Part of growing older is shedding the past and the stuff. If you ask any resident in a nursing home of what they want most, it is not their china or their figurines and sometimes not even their pictures, but rather to be with those they love. Yes, there are those elders who built their home with their bare hands and they are attached to “place” but most of the time, it ends up not being about the place but the fear of being forgotten. Consider this though: in a facility, elders have much more human interaction and attention to emotional needs than they do at home with a single exhausted caregiver who is at their wits end.
Love and companionship can take place anywhere.
Hospice personnel can help family members have these conversations. We lead the way by how we frame it. We can talk about anticipated care needs and why moving may be the best option for care. We can share stories about attentive, compassionate care and the activities that the facility has. We can remind the patients and families that we’ll be there with them too.
Language matters. Words matter.
Let's talk about RESPITE
If you’re talking about a temporary respite with a patient, how do you bring it up? Is it because the caregiver is exhausted? How would you feel if you were the patient and someone told you that you were “exhausting?” Imagine hearing, “I need a break from you.” The caregiver needs to be firm with the patient about their needs but they can do it in a way that doesn’t come across in a way that makes someone feel like a burden.
Consider saying something along the lines of “I want you to have the best care possible and right now I don’t feel I am able to do that for you. Please - I would like to take a few days to rest and recharge my batteries. It will only be until x day and then you will be back home again.”
If the respite is for night time relief and the caregiver is planning on visiting during the daytime, say so. “I’ll come visit you so we can catch up on the news/family/whatever.”
When families are in the midst of caregiving, we can sometimes forget about the relationship we used to have with the patient. If we take time to consider the way in which we talk about caregiving needs with the patient in a way that demonstrates the love that we have, we may be able to alleviate some of the sadness or feelings of abandonment.
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States.
photocredit:
hands Photo by Rod Long on Unsplash
plant photo by Sarah dorweiler on Unsplash
all other photos via author
Friday, November 1, 2019
Monday, September 17, 2018
by Bob Arnold (@rabob)
Good things come in threes. I was on service this week and saw a patient with Lewy Body dementia in the emergency room after he fell and broke his hip. His niece was his surrogate and trying to decide what to do. She asked me whether he should have his hip repaired. In looking through the literature I came across Sarah Berry’s article “Association of Clinical Outcomes of Surgical Repair of Hip Fractures versus Nonsurgical Management in Nursing Home Residents with Advanced Dementia”. Even better, there was an editorial in the same issue of JAMA Internal Medicine placing the article in context. Second, as I was reading the article, I heard the trauma surgeon talking about the same article with her residents. Finally, this morning I woke up and read Bree Johnston’s fabulous special report in JPM on hip fractures in the setting of limited life expectancy, “The importance of considering goals of care and prognosis”. Yahtzee! (My children would point out that only a true nerd would find this trio of events a cause for celebration). While I would recommend you read both the editorial and Dr. Johnston’s fabulous special report, the purpose of this Pallimed series is to look at the data so I’ll be reviewing Berry’s article.
The aim of the article was to assess outcomes for nursing home residents with advanced dementia who did and did not undergo surgical repair of a broken hip. Advanced dementia was defined as a Cognitive Performance Scale (CPS) of 5 or 6 and diagnosis of “dementia” or “Alzheimer disease.” By outcomes they meant survival (the primary outcome), pain, anti-psychotic use, physical restraints, pressure ulcers, and ambulatory status. The authors used the MDS (Minimum Data Set) assessment and linked this to Medicare claims to conduct a cohort study of 3,083 long-staying nursing home residents with advanced dementia and hip fracture.
They found, as have other studies of nursing home residents with hip fractures, that patients who underwent surgery had lower mortality rates (the literature stressed the importance of surgery within the first 24 hours). While 35% died within 6 months, and 61% within two years, the mortality was significantly greater in patients who did not have surgery. These results were greatest in the first 30 days; 11% mortality with surgery, 30% without surgery, and resulted in a median survival of 1.4 years with surgery versus 0.4 years if the patient did not undergo surgery. Adjustment attenuated the findings, but they remained significant.
Residents who underwent surgical repair also had less pain, less anti-psychotic drug use, physical restraint use and pressure ulcers; although once these results were adjusted for differences between the two groups there were no differences according to surgical repair. Interestingly the inverse probability of treatment waiting models, which adjusted for differences in characteristics before the hip fractures, suggested that there was less pain and fewer pressure ulcers among patients managed with surgery. (I need someone who knows more about statistics than me to explain why two different ways of statistical correction resulted in different secondary outcomes).
So, the question is how I should use these results in my patient:
1. Are the patients in this population relevant to the ones I care for? Well, as a hospital-based palliative care doctor these are exactly the kinds of patients for which I am consulted.
2. Are the outcomes that the authors measured the correct ones? Well, it seems to me that pain, survival, and restraints are all things that my patients’ families want to know about. Sadly, for these secondary outcomes they could only look at one point in time. Also, to have data on the secondary outcomes, the patient had to live at least six months (it has to do with when MDS data is collected). Thus, for a lot of the patients we do not have these secondary outcomes.
3. Were the two groups similar in characteristics prior to the operation? Sadly, the answer is no. Residents treated non-operatively were much more impaired at baseline. For example, 26% of the non-operative residents were completely dependent in activities of daily living as opposed to only 5% of the surgical residents. Moreover, despite the large number of variables in the MDS, it is likely there were differences between the two groups that were unmeasured that led the surgeons to choose not to do surgery. In addition, it is unclear whether the decision to do surgery was based on patient/family preferences. Thus, one does not know if the reason for the difference in outcomes was based on surgery or whether other variables led both to the decision to have surgery and the outcomes. This is a limitation of not doing a RCT. Finally, the outcomes could be due to a self-fulfilling hypothesis. Given the non-surgical patients’ greater illness/morbidity, there may have been a decision only to focus on comfort. Given this, the treatment these patients received was less focused on prolonging life and thus they died sooner. (This would have nothing to do with the impact of surgery on survival or clinical outcomes).
4. Were the circumstances and methods for detecting the outcome similar? The answer here is yes. The MDS is a very complete way of detecting the outcomes of interest. Although pain was evaluated by the health care provider rather than the patients, there is no reason to think that there would be differences based on which group they were in.
5. Was follow-up sufficiently complete? Again, the answer seems to be yes, although as previously noted, for patients who did not live six months we do not have any of the secondary outcomes.
6. Are the differences big enough that I should care? Again, the answer is at least with the primary outcome the difference did seem quite large as noted before, the secondary outcomes, differences, particularly after adjustment, are much smaller.
So, what does this mean? In the end, as Johnston et al. summarized, the decision to have surgery depends a great deal on the surrogate decision-maker’s view about the patient’s quality of life preoperatively and what is most important postoperatively. I have to say that this article would, for many of my patients, lead me to do surgery and continue aggressive palliative care (the increased rate of ambulation postoperatively -10.7% in the patients with surgery versus 4.8% in those without surgery - would be a big factor for many families). While a randomized controlled file would be better, it is unlikely that one will ever be conducted. (I am given pause by the mostly negative data presented by Johnston on hip fracture repair. She points out, for example, there is the Cochran review of five randomized controlled trials that shows no difference in medical complications, mortality or long-term pain in conservative care versus surgery. While this is not a study of demented patients, it made me realize the data is controversial).
A coda: What I and the editorial found distressing were the high rates of pain and the low rates of hospice in severely demented patients even after they have hip fractures (particularly in the non-operative patients). It also was quite curious that the median time to utilize hospice was 56 days. Given this article, I wonder whether hospice should be discussed and/or recommended for all patients who have severe dementia and a hip fracture. This article should lead you to talk to your trauma surgeons and/or orthopedists to develop a routine palliative care or hospice consultation for these patients.
Robert Arnold, MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk (@VitalTalk). He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!) You can find him on Twitter at @rabob.
More Pallimed posts from Bob Arnold can be found here. More journal article reviews can be found here.
References
1. Berry SD, Rothbaum RR, Kiel DP, Lee Y, Mitchell SL. Association of clinical outcomes with surgical repair of hip fracture vs nonsurgical management in nursing home residents with advanced dementia [published online May 7, 2018]. JAMA Intern Med. doi:10.1001/jamainternmed.2018.0743
2. Mehr DR, Tatum PE, Crist BD. Hip Fractures in Patients With Advanced Dementia What Treatment Provides the Best Palliation? JAMA Intern Med. 2018;178(6):780–781. doi:10.1001/jamainternmed.2018.0822
3. Johnston CB, Holleran A, Ong T, McVeigh U, Ames E. Hip Fracture in the Setting of Limited Life Expectancy: The Importance of Considering Goals of Care and Prognosis. Journal of Palliative Medicine 2018 21:8, 1069-1073
4. Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA. 2000;284(1):47-52
Good things come in threes. I was on service this week and saw a patient with Lewy Body dementia in the emergency room after he fell and broke his hip. His niece was his surrogate and trying to decide what to do. She asked me whether he should have his hip repaired. In looking through the literature I came across Sarah Berry’s article “Association of Clinical Outcomes of Surgical Repair of Hip Fractures versus Nonsurgical Management in Nursing Home Residents with Advanced Dementia”. Even better, there was an editorial in the same issue of JAMA Internal Medicine placing the article in context. Second, as I was reading the article, I heard the trauma surgeon talking about the same article with her residents. Finally, this morning I woke up and read Bree Johnston’s fabulous special report in JPM on hip fractures in the setting of limited life expectancy, “The importance of considering goals of care and prognosis”. Yahtzee! (My children would point out that only a true nerd would find this trio of events a cause for celebration). While I would recommend you read both the editorial and Dr. Johnston’s fabulous special report, the purpose of this Pallimed series is to look at the data so I’ll be reviewing Berry’s article.The aim of the article was to assess outcomes for nursing home residents with advanced dementia who did and did not undergo surgical repair of a broken hip. Advanced dementia was defined as a Cognitive Performance Scale (CPS) of 5 or 6 and diagnosis of “dementia” or “Alzheimer disease.” By outcomes they meant survival (the primary outcome), pain, anti-psychotic use, physical restraints, pressure ulcers, and ambulatory status. The authors used the MDS (Minimum Data Set) assessment and linked this to Medicare claims to conduct a cohort study of 3,083 long-staying nursing home residents with advanced dementia and hip fracture.
They found, as have other studies of nursing home residents with hip fractures, that patients who underwent surgery had lower mortality rates (the literature stressed the importance of surgery within the first 24 hours). While 35% died within 6 months, and 61% within two years, the mortality was significantly greater in patients who did not have surgery. These results were greatest in the first 30 days; 11% mortality with surgery, 30% without surgery, and resulted in a median survival of 1.4 years with surgery versus 0.4 years if the patient did not undergo surgery. Adjustment attenuated the findings, but they remained significant.
Residents who underwent surgical repair also had less pain, less anti-psychotic drug use, physical restraint use and pressure ulcers; although once these results were adjusted for differences between the two groups there were no differences according to surgical repair. Interestingly the inverse probability of treatment waiting models, which adjusted for differences in characteristics before the hip fractures, suggested that there was less pain and fewer pressure ulcers among patients managed with surgery. (I need someone who knows more about statistics than me to explain why two different ways of statistical correction resulted in different secondary outcomes).
So, the question is how I should use these results in my patient:
1. Are the patients in this population relevant to the ones I care for? Well, as a hospital-based palliative care doctor these are exactly the kinds of patients for which I am consulted.
2. Are the outcomes that the authors measured the correct ones? Well, it seems to me that pain, survival, and restraints are all things that my patients’ families want to know about. Sadly, for these secondary outcomes they could only look at one point in time. Also, to have data on the secondary outcomes, the patient had to live at least six months (it has to do with when MDS data is collected). Thus, for a lot of the patients we do not have these secondary outcomes.
3. Were the two groups similar in characteristics prior to the operation? Sadly, the answer is no. Residents treated non-operatively were much more impaired at baseline. For example, 26% of the non-operative residents were completely dependent in activities of daily living as opposed to only 5% of the surgical residents. Moreover, despite the large number of variables in the MDS, it is likely there were differences between the two groups that were unmeasured that led the surgeons to choose not to do surgery. In addition, it is unclear whether the decision to do surgery was based on patient/family preferences. Thus, one does not know if the reason for the difference in outcomes was based on surgery or whether other variables led both to the decision to have surgery and the outcomes. This is a limitation of not doing a RCT. Finally, the outcomes could be due to a self-fulfilling hypothesis. Given the non-surgical patients’ greater illness/morbidity, there may have been a decision only to focus on comfort. Given this, the treatment these patients received was less focused on prolonging life and thus they died sooner. (This would have nothing to do with the impact of surgery on survival or clinical outcomes).
4. Were the circumstances and methods for detecting the outcome similar? The answer here is yes. The MDS is a very complete way of detecting the outcomes of interest. Although pain was evaluated by the health care provider rather than the patients, there is no reason to think that there would be differences based on which group they were in.
5. Was follow-up sufficiently complete? Again, the answer seems to be yes, although as previously noted, for patients who did not live six months we do not have any of the secondary outcomes.
6. Are the differences big enough that I should care? Again, the answer is at least with the primary outcome the difference did seem quite large as noted before, the secondary outcomes, differences, particularly after adjustment, are much smaller.
So, what does this mean? In the end, as Johnston et al. summarized, the decision to have surgery depends a great deal on the surrogate decision-maker’s view about the patient’s quality of life preoperatively and what is most important postoperatively. I have to say that this article would, for many of my patients, lead me to do surgery and continue aggressive palliative care (the increased rate of ambulation postoperatively -10.7% in the patients with surgery versus 4.8% in those without surgery - would be a big factor for many families). While a randomized controlled file would be better, it is unlikely that one will ever be conducted. (I am given pause by the mostly negative data presented by Johnston on hip fracture repair. She points out, for example, there is the Cochran review of five randomized controlled trials that shows no difference in medical complications, mortality or long-term pain in conservative care versus surgery. While this is not a study of demented patients, it made me realize the data is controversial).
A coda: What I and the editorial found distressing were the high rates of pain and the low rates of hospice in severely demented patients even after they have hip fractures (particularly in the non-operative patients). It also was quite curious that the median time to utilize hospice was 56 days. Given this article, I wonder whether hospice should be discussed and/or recommended for all patients who have severe dementia and a hip fracture. This article should lead you to talk to your trauma surgeons and/or orthopedists to develop a routine palliative care or hospice consultation for these patients.
Robert Arnold, MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk (@VitalTalk). He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!) You can find him on Twitter at @rabob.
More Pallimed posts from Bob Arnold can be found here. More journal article reviews can be found here.
References
1. Berry SD, Rothbaum RR, Kiel DP, Lee Y, Mitchell SL. Association of clinical outcomes with surgical repair of hip fracture vs nonsurgical management in nursing home residents with advanced dementia [published online May 7, 2018]. JAMA Intern Med. doi:10.1001/jamainternmed.2018.0743
2. Mehr DR, Tatum PE, Crist BD. Hip Fractures in Patients With Advanced Dementia What Treatment Provides the Best Palliation? JAMA Intern Med. 2018;178(6):780–781. doi:10.1001/jamainternmed.2018.0822
3. Johnston CB, Holleran A, Ong T, McVeigh U, Ames E. Hip Fracture in the Setting of Limited Life Expectancy: The Importance of Considering Goals of Care and Prognosis. Journal of Palliative Medicine 2018 21:8, 1069-1073
4. Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA. 2000;284(1):47-52
Monday, September 17, 2018
Tuesday, December 23, 2014
(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)
by Chris Okon
While trying to sustain some level of compassion for the elderly, frail and sometimes dying patients, the overworked clinicians and staff must work under the knuckles of a red-taped hospital administration which in turn is squeezed by the larger powers-that-be of a broken and somewhat Kafkaesque healthcare system, CMS/Medicare, digital technology, hospice service salespeople, and other monkey wrenches.
Add the personal goals, quirks and challenges of each character and you get unexpected and hilarious situations that may ring very true for those involved in palliative care, long-term care, and hospice.
For example, floor nurse Dawn Forchette (Alex Borstein) knows her profession well but is insecure and so hungry for love that she foists a zero-to-sixty commitment on the unwitting supervising nurse Patsy de La Serda (Mel Rodriguez) who is still in the dark about his own sexual preferences.
Nurse DiDi (Niecy Nash) is probably the most likable and steady character, keeping a level head and caring compassion while navigating the chaos of quirky protocols, emotional meltdowns of coworkers, and the overarching bureacracy. In once scene, DiDi lets the family enter the room of the mother who just died. "Take as long as you want," DiDi says, quickly followed by Dawn's whisper of "we actually need that bed by 11."
The frazzled department lead Dr. Jenna James (Laurie Metcalf), in denial that she has reached a career dead-end, still clings to the dream of producing groundbreaking research about fecal anomalies, so much so that she chastises a nurse for removing a critical study sample of "feces, not a turd" left on a chair by one of the more impish dementia patients.
Several ancillary characters add depth, such as the sweet and eager hospice volunteer; the mixed batch of ornery, sweet, or just plain vacant patients; the ingratiating saleswoman for a profit-driven hospice care enterprise; the steady stream of various family members who argue, compete, cajole, or cry over the mother, father, sister, in the hospital bed.
Based on the BBC series of the same name, the American version of Getting On just completed its second season but can be viewed on HBO or HBO Go. Start from the beginning with Season 1 to see how character dynamics are established, although any episode presents hilarious and familiar situations.
(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)
Season 1 Trailer
Season 2 Trailer
As a volunteer with Hospice by the Bay, Christine Okon offered gentle bodywork to many people at the end of life, feeling privileged to hear their stories. She learned much from Les Morgan who founded Growth House, ahead of its time for using technology to build a social network for those involved with EOL. Christine lives in San Francisco and works for Kaiser Permanente on the patient safety aspects of their EHR.
Tuesday, December 23, 2014
Saturday, December 6, 2014
Have you ever had a patient at home who was in need of dental care? Perhaps they were receiving hospice services or maybe they were just discharged from the hospital not on hospice, but still too frail to get to the dentist. Of course the focus is often on the medical issues, yet the most significant issue was broken rotted teeth, which made oral intake nearly impossible without pain. Clearly, the answer here is not opioids for pain control, but rather to take care of the root problem: access to dental care.
Clearly dentists and their staff are not part of a hospice or palliative care IDT, but when you need them, boy do you need them. If the short case I outlined is not clear enough for you, I would really encourage you to read “Love” by Jean-Noel Vergnes, DDS, PhD recently published in the Annals of Internal Medicine (paywall). Written by a dentist in France caring for his wife who had a stroke and was desperately in need of dental care he himself could not provide, it illustrates the anguish of not being able to provide care you know someone needs.
“And little by little, it got difficult to clean her teeth with a toothbrush, too; she made little animal noises all the time, as if we were hurting her. So, it’s true that I didn’t take that much care of her mouth.”Yet in the end there is a deep satisfaction when a dentist is found who will come to the home and provide the much needed care for his wife.
“Knowing that such a possibility existed made me change my mind. Actually, I’d always had this little voice in my head telling me that I wasn’t doing what was best for her, that I might be convincing myself that it was useless just because I didn’t have the strength to get on with it.”Reading this story makes me reflect on the access to home visit dentists in my metro service area. When we need a dentist, the team works frantically to find someone willing to come out. So what are the barriers for a dentist? Is it malpractice insurance out of the office? Lack of access to the ever more complicated tools while in someone’s home? Lack of adequate reimbursement? Lack of time? I know many dentists do charitable activities in urban and foreign locations (usually for children), so I know the barrier is not likely to be a cold, uncaring heart. How can we as palliative care providers strengthen this relationship with dentists so the care is not needlessly delayed? The answers are likely complex and different in every community, and I know the answer is not the DentiDrill Home Dentistry Kit. Yet, I’m hopeful by asking this question of our great communities we might find a better answer together. Then maybe more people can have memories like this:
“She gave me a wonderful, broad smile. She was beautiful, so very beautiful. Ah, how can I put it? I knew that smile would be her last. I smiled back at her, savoring the moment . . . a moment that I couldn’t even try to describe. And that smile was, indeed, her last. I’ll remember it every day that I have left to live.”
Vergnes, J. (2014). "Love", Annals of Internal Medicine, 161 (10) DOI: 10.7326/M14-1076
Saturday, December 6, 2014
Friday, November 21, 2014
Dr. Calkins praised the work of the nurse managers who called each patient ahead of the storm to verify important areas like safety, medications and emergency plans. "We are calling our patients every day, more if needed. But new issues arise when a patient suddenly has severe symptoms or begins to enter an active dying phase." She noted calling several pharmacies to find many of them closed. The two she found open (with pharmacists stuck there when they could not get home) were able to fill medications, but the patients nor families could not necessarily get to the pharmacies!
"What about walking?", I asked. "Impossible in many areas because the snow is too deep and there are no safe areas to walk," she replied. "We have some of our emergency services using snowmobiles. We are really appreciative the ambulance service has given priority to our patients when needed."
Imagine being greeted by this when you head out to get the milk! More crazy #snow scenes in NY state #Buffalo... pic.twitter.com/GYjnwKKyEx
— Simon King (@SimonOKing) November 21, 2014
Another issue hospices may overlook when transportation is cut off because of natural disaster is the complications of after-death care and safe removal of someone who died. Since funeral homes are unable to arrive, ambulance service may be the only option, which is not a customary choice when you think about a death on hospice.Most of the staff have been handling crises by phone, but the staff are not immune to the effects of the storm. "Both our patients and our Team 6 staff live in the south Buffalo area which was hit hardest." If staff cannot get out of their homes, they are not going to be able to get to patients obviously. In addition, they may be primary caregivers for children or adult family members in an already stressful situation.
Dr. Calkins is hopeful the upcoming warm weather will provide relief from the snow, but is aware the risk of flooding remains high, which may put the integrity of houses at risk even more than the potential of a snow-collapsed roof.
When these natural disasters hit, the attention almost always focuses on hospitals, fire and police, but it is critical to support home-based medical services as well. A big thank you for the strong work by all hospice and home health professionals in Buffalo.
Here are some pictures provided to us from Hospice Buffalo:
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Check out the past stories in our Disaster Preparedness series:
Iowa Floods Affecting Hospice Care
Hospice Care in the Aftermath of Hurricane Ike
Video Credit: Drone Footage Storm Day 3 by James Grimaldi via YouTube
Photo Credit: "Buffalo, NY" jilleatsapples via Compfight cc
Photo Credit: All other images courtesy of Hospice Buffalo - All Rights Reserved
Friday, November 21, 2014
Sunday, March 17, 2013
The State of the Science plenary is one of my favorite traditions at the AAHPM Annual Assembly. This year, Jay Horton and Kim Johnson took the lead in presenting analyses of some of the previous year's most important hospice and palliative medicine research. For those attendees interested in seeing their slides again, you can find them here.
Some of the research below further confirms our previous understanding of the state of the science (for instance, the studies on the low utility of feeding tubes in many circumstances). Other studies provide quality randomized controlled trial data on questions which have nagged our field but where previous RCT data are minimal or completely lacking (e.g. parenteral fluids near end of life and ketamine for cancer pain).
We'd love to hear what you think about each study. Feel free to comment on the blog. If you like a study, you can further disseminate it by Retweeting it directly from this post!
Associations between end-of-life discussion characteristics and care received near death: a prospective #hpm13 ncbi.nlm.nih.gov/m/pubmed/23150…
— Lyle Fettig, MD (@lfettig) March 16, 2013
A randomized, placebo-controlled trial of acupuncture in patients with COPD #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22905…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Barriers to conducting advance care discussions for children w/ life-threatening conditions. #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22392…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Surrogate decision makers' interpretation of prognostic information: a mixed-methods study. #hpm13 State of Science ncbi.nlm.nih.gov/m/pubmed/22393…
— Lyle Fettig, MD (@lfettig) March 16, 2013
RCT to assess the efficacy/ toxicity of subcutaneous ketamine in management of cancer pain. #hpm13 State of Science ncbi.nlm.nih.gov/m/pubmed/22965…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Feeding tubes and the prevention or healing of pressure ulcers.#hpm13 State of science ncbi.nlm.nih.gov/m/pubmed/22782…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Does feeding tube insertion and its timing improve survival?#hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/23002…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, RCT #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/23169…
— Lyle Fettig, MD (@lfettig) March 16, 2013
meaning of IV/sq hydration 2 family caregivers & pts with advanced ca receiving hospice care.#hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22459…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Influence of hospice on NH residents with advanced dementia who received Medicare-SNF near the end of life. #hpm13 ncbi.nlm.nih.gov/m/pubmed/23110…
— Lyle Fettig, MD (@lfettig) March 16, 2013
Sunday, March 17, 2013
Sunday, October 30, 2011
Helen Kao at Geripal recently wrote a thoughtful post which highlights some of the flaws in the California POLST form. It's worth a read and I agree with her comments. (And even though I use "POLST" here, I agree with her thoughts on using "POST" instead.)
For jurisdictions which are considering the establishment of POLST, it is important to consider the experience of other states as new forms are designed and legislation is drafted. I live in one of the many states which is in the process of developing a program. In spite of the weaknesses of forms currently in use in other places, PO(L)ST/MO(L)ST remains a very helpful tool with new research continuing to back its utility. For instance, consider a recent study published in the Journal of the American Geriatrics Society which demonstrated high consistency between treatments provided to nursing facility residents and orders recorded on POLST forms. The study found that overall, POLST orders were consistent with treatments provided 94% of the time. Consistency rates were especially high for resuscitation orders. Consistency rates were slightly lower for antibiotic use and much more modest for feeding tubes use.
Reasons for inconsistencies between orders and treatments should be evaluated further. It's unclear that improving the form itself would reduce these inconsistencies. Patients' preferences sometimes change and sometimes patients want their surrogate to have the leeway to change orders after the patient loses capacity (perhaps using a "best interest" standard of decision-making at that time rather than a pure "substituted judgment" standard).
I hope that my state will "get it right the first time" taking into account the experiences of others. However I know that it is impossible to get it completely right the first time. Therefore, I hope that any legislation approved will include a process for modification of the forms which does not require the wheel to be reinvented down the road.
Sunday, October 30, 2011
Wednesday, February 2, 2011
(Disclaimer: I currently work for a non-profit hospice agency and have not worked for a for-profit agency)
This has been a question that many in the hospice community have asked but the research on the subject has been pretty minimal and most strongly influenced by strong anecdotal experiences from people who have worked on either side of the for-profit (FP) and non-profit (NP) divide. JAMA’s lead article this week ("Association of Hospice Agency Profit Status With Patient Diagnosis, Location of Care, and Length of Stay") is a retrospective study on the demographics of 4705 patients who discharged from hospice (16% discharged alive). (Available free online)
First let’s look at the stats before we get to what I might consider the ‘spin’ placed on this article. The authors looked at a few key variables and found FP hospices had more patients with dementia (OR 2.32) and more patients in nursing homes (OR 1.32). What understandably follows is that FP had longer Length of Stay (LOS) (Median FP – 20 vs NP – 16), not very surprising. Of note they found no difference in number of nursing visits, and more visits for social workers in NP, and more visits for home health aides in FP.
Compared with nonprofit hospice agencies, for-profit hospice agencies had a higher percentage of patients with diagnoses associated with lower-skilled needs and longer lengths of stay.And from that the media concludes:
But I think we have to ask ourselves as a field, is this study trying to be more ambitious in its conclusions? And has the media amplified that?
We have to be very careful to examine the assumptions of this article. Nothing in this article tells us why any of the results are true. Maybe it is good to have a different mix of disciplines for patient in nursing homes or with different diagnoses? What is really the best combination for high quality hospice service to be delivered? Ask yourself what the conclusions would have been if there were a lot more SW or nurse visits for patients in a nursing home or with dementia. Would we then clamor and say ‘that is too many visits compared to a patient at home or with cancer!’
The authors note in the comments the many limitations for this study and most importantly I will highlight this paragraph since the majority of the world will stop at the summary and never even read the article:
Finally, and perhaps most importantly, we are unable to assess the relationship between profit status and quality of care. While our study improves on previous research by assessing the number of visits per day by various hospice personnel, we lacked important information on the length of each visit and care provided. For example, we could not distinguish between a home health aide visit that consisted of a 5-minute “check-in” and a half-day visit providing assistance with activities of daily living. We are also unable to determine whether higher rates of home health aide visits in for-profit hospices reflect additional care or substitution of other types of unmeasured (and potentially more expensive) clinical services. We also could not distinguish between visits delivered by registered nurses and licensed vocational nurses; past research suggests that registered nurses, who are more skilled and more expensive, deliver a lower proportion of nursing visits in for-profit hospices vs nonprofit hospices.Now I may be wrong but I imagine there are a lot of NP hospice agencies that may use this article as evidence they will do a better job. But I am not sure this article really supports those conclusions. Maybe I am being cynical and no one in the US hospice world would ever draw those conclusions from this article but if the LA Times is hyping it that way, I can't be too far off. If you are looking for more detailed info I think the MedPAC report (Chapter 8) has a lot more to say about the differences between NP and FP.
I am not someone who will come out to defend profit making and accountability to investors as a good practice model for health services, but I also don’t want to see our field tearing itself apart over these philosophical differences because we did not read the whole article and just depended on the summary.
(UPDATE 11:35PM Here is the response from the NHPCO. Which includes this great quote: "The study authors seem to conclude that such patients are 'lower skill' – the implication being that their care needs are minimal. This reflects a fundamental misunderstanding of the important unmet needs for persons dying from dementia. A person dying from dementia may still experience pain," remarked noted researcher Joan Teno, MD, MS, of Brown University and a member of the NHPCO board.") (By the way, I will leave a lot of leeway for comments on this article, but I ask that you be civil and support your points well.)
Wachterman, M., Marcantonio, E., Davis, R., & McCarthy, E. (2011). Association of Hospice Agency Profit Status With Patient Diagnosis, Location of Care, and Length of Stay JAMA: The Journal of the American Medical Association, 305 (5), 472-479 DOI: 10.1001/jama.2011.70
Wednesday, February 2, 2011
Tuesday, August 10, 2010
A few items about palliative care in the ED, prognosis of delirium, and whether antibiotics improve symptoms in pneumonia. See below the fold. I'm traveling next week, so probably won't blog again myself until later on in August. Summer, ugh, is rapidly fading....
Tuesday, August 10, 2010
Sunday, March 7, 2010
JAMA published a matched retrospective cohort study which examines the outcomes of Medicare beneficiaries after an ICU stay. The study also reports some notable data related to mortality in patients sent to a skilled nursing facility.
The investigators started with a 5% random sample of all Medicare beneficiaries over the age of 65 and divided that sample into two. The first sample comprised the study cohort of ~35,000 patients who survived a hospitalization that included an ICU stay in 2003. The second sample comprised two control cohorts: an "I survived the hospitalization and didn't have to go to the ICU" cohort and a general population cohort. The latter two cohorts were matched with the study cohort based on age, race, sex, and whether the hospitalization had a surgical or medical DRG.
The cohorts on the whole were similar with respect to gender, race, and age. Not surprisingly, those patients admitted to the ICU had a greater burden of comorbid chronic illnesses, and the mechanically ventilated ICU patients were the sickest, with 57% having three or more comorbid conditions.
Some of the results:
- 6 month mortality: ICU survivor mortality was 14.1% (30.1% for those receiving mechanical ventilation) compared with 10.9% for hospital controls and 2.7% for the general controls
- 3 year mortality: ICU survivor mortality was 39.5% (57.6% for those receiving mechanical ventilation) compared with 34.5% for hospital controls and 14.9% for general controls
- Discharge to a skilled care facility was an independent predictor of mortality at both 6 months and 3 years, regardless of ICU status during hospitalization (6 month and 3 year mortalities, respectively: 24.1%/54.6% for ICU/Hospitalized controls who went to SNF vs. 7.5%/29.4% discharged home in both cohorts.)
- Readmission to the hospital was a common event in all hospitalization cohorts, but most common in those requiring ICU care (45% in first year for MV patients and 43% for non-MV ICU patients).
The results are difficult to apply to an individual patient. A previously healthy 70 year old patient who survives mechanical ventilation for pneumonia obviously has a different prognosis than a 70 year old who has end stage renal disease, CHF, and diabetes who survives mechanical ventilation for line sepsis.
But the results should be heeded by hospitals, ICUs, and palliative care teams. Wide variation exists in the volume and type of utilization of palliative care in ICUs. Palliative care is typically consulted when it's clear that the patient is not getting better. As I've said recently, that's not the only type of patient we should be seeing. A poor prognosis need not be certain. The higher mortality/comorbid burdened patients described in this study (especially the mechanically ventilated cohort) could be perfect for palliative care, even though they all survived hospitalization. The challenge to our field would be providing the capacity to meet the demands of this population. Questions that we need to ask of ourselves include:
- Do we offer a time-limited consultation for advance care planning/goals of care delineation/complicated discharge planning with a plan to "remain on the sidelines" after we've helped answer those initial questions?
- Or do we provide chronic care for patients like this (really would need increased provider capacity)?
- Related to 2, what about palliative care at SNFs?
- How many of the palliative care interventions should be "organic" within the ICU (without PC consultation)? How do we best ensure PC issues remain a focus after the patient is discharged?
Here's the last paragraph in the discussion:
The magnitude of the postdischarge use of skilled care facilities for both ICU survivors and hospital controls and the high long-term mortality for all of these patients call into question whether discharge to skilled care facilities is merely a marker for higher severity of illness with appropriate delivery of care. These patients could have been discharged prematurely from acute care hospitals, and needed a higher level of care than they received. It also is possible that these patients could have had better outcomes if discharged home, but were not able to be sent there due to lack of sufficient support from family or friends to act as caregivers. These findings highlight the need for a much more detailed understanding of the long-term care needs of these patients.In the age of throughput, there's no doubt in my mind that some of these patients were discharged from the hospital too early. However, I'm bemused in trying to sort out how these very sick patients might have better outcomes at home if they only had better caregiver support, assuming that by "outcome," the authors refer to mortality. The only outcome that might have been better for some of these patients at home would be a palliative care outcome: receiving care in the setting of choice. To that end, I do agree that we need many more details regarding the long-term care needs of this population.
See other related posts on prognosis in the ICU here and here.
(Illustration courtesy of Niels Olson on Flickr. See here for the original, which has scroll over notes.)
Sunday, March 7, 2010
Thursday, February 11, 2010
Greetings. This is my first guest-post on Pallimed; I’m hoping it won’t be my last. I had envisioned a cleverer debut, elucidating my inclination to HPM vis-à-vis my bio, as a non-traditional (read mid-life-crisis-old) entrant to medicine, and my specialty (PMR by way of EM). However, Drew is taking a hiatus and the article I’m posting on now fell into my lap while still printing-press warm. So, thanks to Drew, Christian and to the entire Pallimed Editorial Board for the encouragement and invitation. On to Pallimed…
Drew just posted 'It just changes the complications' covering an ethnographic study that appeared in the Archives of Internal Medicine about the influence of nursing home (NH) culture on rates of tube feeding of patients with advanced dementia. My thoughts upon reading this (and I’ll wager I wasn’t alone) was that the information and the differences noted made sense to me, but it’s tough to make institutional and policy review and implement indicated changes based on ethnography.
So, as if in telepathic response to Pallimed readers, the current issue of JAMA contains an article about just this topic, abounding in hard data. Teno et al. 2010. Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment. JAMA. 303(6):544-550. The good people at GeriPal have also posted on this article.
This is a large, retrospective, chart-review covering the 8-year period from 2000 through 2007. It has a Texas-sized data set, N = 280,869 admissions for 163,022 residents of nursing homes with advanced cognitive impairment. The U.S. Nursing Home Minimum Data Set defined the study population. The resultant random sample size represented 20% of all Medicare beneficiaries who were previously non-tube fed NH residents age ≥66, admitted to 2797 out of 5401 U.S. hospitals during the study period.
The rates of endoscopic or surgical insertion of a gastrostomy tube (G-tube) placement during a hospitalization varied from 0 to 38.9 per 100 admissions (mean 6.5, median 5.3).
Encouragingly, the practice showed a decrease over time. The mean rate of feeding tube insertions per 100 admissions was 7.9 in 2000, decreasing to 6.2 in 2007, with the biggest decrease occurring in 2005.
I feared certain ugly truths possibly emerging that perhaps patients’ best interests would be sacrificed for medical student or resident training; or that hospitals with high specialist-to-PCP ratio would nudge patients down an unfortunate path. These fears of mine were not borne out by the data.
Hospital characteristics that did emerge as risk factors for G-tube placement in NH residents with advanced cognitive impairment were in order of decreasing adjusted odds ratios:
- Greater ICU use in the last 6 months of life
- Larger size, and
- For-profit ownership vs government ownership
These differences persisted after controlling for patient characteristics. I think these represent at least unfortunate truths. To me there is a certain Kafkaesque darkness to the notion that admission to a large, for-profit hospital with high ICU use in the last 6 months of life results in significantly higher rates of G-tube placement in NH residents with advanced dementia.
Several nursing home resident characteristics were independently associated with G-tube placement. Black NH residents with severe dementia had about a 2-fold increased likelihood of having a G-tube placed; white residents had the lowest likelihood of G-tube placement.
Patient characteristics that reduced the likelihood of G-tube placement were having written advance directives, DNR orders, and orders to forgo artificial hydration.
Hospice use was weakly or not associated with feeding tube placement. This last factoid was perplexing to me. It led me to consider if this incongruity was a function of the heterogeneity and evolution of HPM practice models and styles over geography and time, e.g., placing venting G-tube placement for anticipated GI obstruction, or ex post facto, late hospice referrals.
Hypotheses anyone?
Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A, Intrator O, & Mor V (2010). Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA : the journal of the American Medical Association, 303 (6), 544-50 PMID: 20145231
Thursday, February 11, 2010
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