Barbara Bush died yesterday after a very short period of comfort care after she elected to stop any further attempts at curative care. She may or may not have received formal hospice care.
A source close to the Bush family tells CBS News’ Jenna Gibson that, while Mrs. Bush’s COPD makes it difficult for her to breathe, she is alert and was having conversations last night. She was also having a bourbon.
— Katie Watson (@kathrynw5) April 17, 2018
If I was 92 and knew that I was going downhill, I think I would elect Scotch over bourbon. I would also elect to spend what uncertain time I had left at home with family and friends instead of in the hospital where the quantity of remaining life may be greater at no better and probabilistic lower quality of life.
If she had elected hospice care, she would have had a very short span of hospice utilization. Hospice qualification for someone covered by Medicare has a fairly strong normative pathway. An individual will be identified as having a high probability of death within the next 180 days in the opinion of the treating physician and the medical director of the admitting hospice. Once an individual elects hospice, they give up curative care for the primary diagnosis that led to hospice. Ideally, then the individual uses hospice for several weeks to a few months. Short spans of less than a week and long spans of more than six months are seen as meaningfully problems.
MedPac’s 2018 report on hospice utilization repeats a common sentiment that echoes years of previous statements:
The Commission has previously expressed concern about very short hospice stays. More than one-quarter of hospice decedents enroll in hospice only in the last week of life, a length of stay that is commonly thought to be of less benefit to patients and their families than enrolling somewhat earlier. Very short hospice stays (e.g., 25th percentile) occur across a wide range of diagnoses
We are also moving towards a medical system that is supposed to be “patient-centric” with a dozen distinctive definitions of what that actually means. The patient and their family are the drivers of decisions while the clinicians facilitate and illuminate pathways that can be chosen. So if a patient chooses to try one last round of treatment and then chooses to forego further curative care at the very end of life, how do we reconcile a strong normative belief on “proper” hospice utilization with patient centeredness?
Bourbon is recommended.
Cermet
The solution is rather ‘simple’ to fix but then, such a fix, very much, defeats the “purpose” of hospice concept; that is, allow not just heavy pain relief but also limited medical intervention (defining that is tricky) so that neither the patient nor family feel that the hospice is nothing more than a sure fire death sentence. That is what makes most people think twice and decide on massive/costly intervention.
Kristine
My mom passed away three hours after I got her settled into hospice. I always felt the hospital discharged her to keep her death out of their statistics, but I could be wrong.
JMG
Dear Mr. Anderson: In December of 2016, my mother, at age 92, same as Barbara Bush, died of roughly the same cases, congestive ling and heart failure. It was a Monday night when she was admitted to the hospital (Mayo Clinic Jacksonville, Fla.), Tuesday evening when we were all told there was no further treatment possible and she, at her own wish, was shifted into comfort care (they called it something else). By Thursday evening, when she was shifted to the hospital’s hospice center, she was already unconscious. I guess this is a long-winded way of saying short hospice care stays are sometimes due to sudden health crises in the very old rather than a planning issue.
JMG
I should add one point. It became very clear early in the 48 hours my mom was in hospice that one of the points of such a short-term stay was for the amazing people in the hospice center to care for us, the living grieving, as much as it was to make sure mom knew no pain nor anxiety at the end.
mak
Thank you, David. And thank you, JMG.
Tokyokie
My guess is that extremely short hospice stays are because the patient and/or family don’t accept that death is inevitable for somebody with a chronic, terminal condition until it is imminent. I guess you’d have to have the attending physician do a better job of educating the patient and the family to get around that.
In Barbara Bush’s case, when I read that she was only going to receive comfort care, I thought that meant she had become a hospice patient. (Hospice care can be administered in a free-standing center, in the home, or in another healthcare facility.) But I wonder where the line between comfort and curative care is. For her to go that quickly, I’m wondering whether it was from respiratory failure due to the COPD or heart failure from the CHF. Would the provision of oxygen at 3L/minute and the breathing treatments be considered comfort or curative? Being able to breathe is certainly more comfortable than the alternative, but basic respiratory therapy would likely forestall respiratory failure. Where do you draw the line? Whether the patient is on a ventilator?
Bg
My husband was in hospice care at home for less than two weeks. I wonder if people realize that hospice at home does not provide round the clock care. I could not have done the physical work of keeping my husband clean and comfortable by myself. We were fortunate to be able to afford private aides, who were wonderful. What do people who do not have those resources do?
dr. bloor
@Tokyokie:
A savvy attending might be helpful, but the issue is that “hanging on til the last” is pretty much reinforced as a societal norm from cradle to grave. The dying are frequently the first to know and last to admit it.
Argiope
Is the assumption that the families who end up with short stays are just in denial? Like JMG’s mom, my mom had a sudden health crisis that occurred after apparent remission from CA, or at least with no active disease for almost 3 years. Her 5-day hospice care occurred at home, which was her wish, but only after a short hospitalization to determine what the health crisis was all about. She was living independently at the time the crisis happened. In my experience with a few family members, home hospice requires an active team of willing and physically able caregivers who are ready and able to put their lives on hold until their loved one’s has wrapped up. That makes it out of reach for many people, whose jobs must be attended daily in order to take care of the basics like buying food and shelter. Additionally, home hospice care requires a number of physical caregiving skills that many people aren’t comfortable learning or performing, and often circumstances require them to learn these new things at exactly the same time that grief is interfering with new knowledge acquisition. In a perfect situation, we’d have lots of notice about impending death and could treat home death like home birth: acquire knowledge before we need it and get lots of support from professionals. In reality, the combination of unpredictable timing of need plus lack of social safety supports may make Medicare’s goals elusive for a long while yet.
ETA length of time in hospice
Cheryl Rofer
David, I saw an article recently, I think by Kevin Drum, that suggested that the commonplace idea that “end of life” care accounts disproportionately for medical costs. The idea was that we have a picture of old people soaking up medical expenses at last-ditch efforts to keep from dying at either the doctor’s or patient’s judgment. But it seems to me that there is an issue like that that JMG brings up.
Say you have a twenty-eight-year-old victim of a serious auto accident. They’re going to get a lot of attention, but some will die anyway. That’s “large costs at end of life,” but a different scenario than the old-person scenario. End of life care can be expensive, but if an expensive intervention works, then it’s not end of life care.
So perhaps the statistical measure might be age-adjusted. Or a combination of age and closeness to death.
How do people in your profession deal with this?
Bg
@Tokyokie: I don’t think that’s always the case. My husband had stage 4 cancer but did great with surgery and chemo for 2 years (travel, time with kids and grandkids, worked on home projects), then suddenly things went bad. He was in the hospital for about 10 days while they figured out if it was the cancer alone or the new chemo he was on that was making him so sick; they stopped that chemo to see if he would improve. He didn’t. Then home hospice for about 10 days . Nobody was in denial. Just figuring out what was going on, and making the arrangements. Our large community has multiple hospice companies. We took a couple of days to research & interview them to try to pick the best one, and to arrange for additional help at home. These are extremely difficult decisions and arrangements to make at an extremely difficult time.
Another Scott
I’m not understanding the problem with short hospice stays.
My father had uveal melanoma that eventually spread to his liver. He had about 3 years after his initial diagnosis, but once it spread to his liver and didn’t respond to radiation treatment he went down hill quickly. He was only in hospice about 2 weeks.
A good friend had AML leukemia that seemed to respond well to chemo, but then he had a relapse. He was in a hospital with a dedicated leukemia wing and was able to rally a bit near the end, but died less than 6 months after his diagnosis (and before he was able to enter a formal hospice program). They were able to make him more comfortable in his last day, fortunately.
Sometimes things just happen too quickly to spend 6 months in formal hospice. I don’t think that’s a problem with the hospice system. But I haven’t read the links.
Cheers,
Scott.
Capri
It is my hope that Barbara Bush does more to help others in death than she did in life by de-mystifying comfort care.
Another Scott
@Bg: Well said.
The plan with my dad was to set him up for hospice at home after he was stabilized at an outpatient facility. But he was having nightmares, hallucinations, and medication issues on the first night that made home stay impossible. The logistics of the transfer, paperwork, etc., etc., back to the outpatient facility for hospice was difficult.
Setting up hospice isn’t like picking a babysitter. I hope the authors of the study understand its complexity…
Cheers,
Scott.
satby
With the elderly, it can be difficult to predict what timeframe the final days will be. We did home hospice with my mom, 10 days total, but she was expected to live a few days to weeks longer. I suspect that some of the quicker deaths are because once the person has accepted their own death they start to physically release their hold on life. I’m not into metaphysical stuff, but I have seen it happen often enough that I believe when the will to hang on goes, the person often goes very quickly after, even if that wasn’t expected to be as immediate of an outcome.
gvg
I don’t think you made the “problem” as clear as in some of your other posts. In fact, I thought it might be a case of blinkers of people who want hospice care to increase, only reading the data in terms of their own issue. Situations are varied therefore hospice is never going to be used by the majority.
My aunt just died of a long problem cancer with years of good and several downs. My sister is a doctor so everyone was asking her to explain things. She repeated a bunch of times that doctors were not at all good at predicting the specific time of death or even get the month right. I have also known a few people who never got a real clear diagnoses of health issues and therefore treatments tended not to be very effective. We don’t know everything. I imagine the not clear diagnoses don’t get referred to hospice for instance.
Oh yes, in addition not everyone will ever be comfortable with letting go. some people are just more afraid.
laura
My dad died on March 10th at home in hospice care. The lead up is still to painful for me to discuss, but as Bg pointed out, round the clock health aides are not covered by medicare. Each days billing was $700.00 for two 12 hour shifts. But they do not dispense medications which were hourly and then more frequent in the last 36 hours of dad’s life to stay on top of pain and ensure comfort and the absence of anxiety.
Had we had prior knowledge and a bit of instruction, it would have been possible to forego the health aide expense.
Once he ceased voiding, I would have preferred that only family provided his care as the aide was not aiding and the presence became intrusive on an intimate and loving family home death with care and support by his three children, son in law and grand dog. He spent his last days sipping coffee and listening to west coast cool jazz and being told how much he was loved and that he was free to move onto the next as soon as he was ready.
The duration of his home care was just about right. I would have brought him home a couple of days sooner but for a struggle with his vacationing oncologist who preferred him to remain in treatment which precluded adequate management of sudden, intractable pain.
Bostonian
So how does that process interact with hospital shenanigans about Medicare? Most hospitals will do anything they can to avoid actually admitting an elderly patient and letting Medicare A kick in, which results in middle-class patients either being denied therapy or being bled out of pocket for it. Hospitals will keep elderly “under observation as an outpatient” for weeks if they have to to avoid admission. Is it different if the patient is rich?
DanR2
I guess my dad (mesothelioma) hit the sweet spot being in hospice for 3 months. He was only stuck in bed for the last ten days. About the same for my father in law (stage IV melanoma) although he spent about his last 6 weeks in a bed. There is sort of a misconception that being in hospice means being bedridden and under constant care on death’s doorstep. Not really, until the very end. Hospice seemed to be more about having access to morphine along with a 3 visits a week from a nurse to make sure it was the patient taking it.
I remember having a discussion with my Dad’s hospice nurse that I was surprised they would leave a patient in his condition in the care of amateurs like me, my sister and my mother. She said we were doing great, and I realized how horrible it must be in cases where there is literally no one to give a damn about grandma dying in the back room.
Cheryl from Maryland
The idea that there is a set time is hopeful but rarely true. My mother had what is considered the “normal” hospice pathway of 5 months staying at home. She had multiple conditions, including myeloid leukemia and NASH. She was remarkably self reliant — moving around the house with a walker, fixing simple meals, and mainly just needed regular visits from the nurses, help bathing, pain meds. The hospice people were getting concerned she would live beyond the six months (they didn’t tell her, just us) when one day she said, “I’m tired of this.” She died at the end of that week. We are convinced that she could have kept on if she wanted, but she didn’t want. Hospice was a godsend for her to be at home; that she might have lived longer and would have been considered a “problem,” potentially denying us the nurses’ visits (for my mother those were social occasions as well as for health), would have made our lives much more difficult.
JeanneT
My husband was in hospice for 3 months with end stage prostate cancer. He still had several chemo options he could have tried, but after 5 years of constant treatments, he had no interest in doing up to 5 more months of living with chemo.
The hospice services were good for getting the pain relief and oxygen generators he needed; everything else about hospice felt intrusive and disruptive to me as the caregiver. Before entering hospice, I had pressed his doc to prescribe a radiation treatment that significantly reduced the pain from my husbands bone mets; that was a good start to 10 weeks of decent comfort while he could enjoy reading, writing and communicating with friends, then two weeks of quick decline. As a caregiver it was very demanding, but I think for my husband it was a wonderful thing to have those months of minimal medical intervention.
Nicole
This is really interesting reading. My mom had hospice, but it seems to my child’s memory that it went on for some time. Mind you, she died at 35, so it was also either being covered under my dad’s insurance or my dad paid for it somehow (this was 1982). I was 10, so I didn’t know what they were there for, other than to help my mom; no one told us kids what hospice was for. It seemed to me my mom was still getting treatment at the same time, though. But, again, child’s memory and 35+ years ago.
We became very close friends with one of the hospice workers. She came to my wedding. :)
Sab
@Bostonian: My mother died in at home hospice care about thirty six hours after it started. The hospice care was wonderful,as were the hospice workers.
I had no idea it was an option. I will never forgive the self-righteous twerp that my mother had as a primary care physician who didn’t let us know that this was an option until the last possible time, and did everything she could to make the transition difficult.
I had to handle all the end of life care at home, with no expertise or even knowledge, because my mother’s primary care physician was so committed to hospital care, which is the last place on earth an elderly person with end of life declining health issues should be.
dnfree
Everyone I know personally has always raved about how helpful hospice care was, but that was not our experience with my father. He had dementia, and suffered aspiration pneumonia (a common situation apparently), and had the tests to indicate he couldn’t safely eat food of any consistency without the risk of it going into his lungs. So he had a no food by mouth order, and the alternative was a feeding tube, which we knew he did not want.
Our week and a half with hospice was spent in disagreements between the hospice staff and the nursing home staff over feeding him, so that was one problem. Illinois requires that food be offered, apparently, and the staff took that quite literally. They were urging him to eat despite the no food by mouth order. But that wasn’t even the worst of it. We were told the first week that hospice would come see him and check on him every other day, Monday-Wednesday-Friday. This wasn’t done on any kind of set time schedule, so we could never manage to meet them when they were there. During our week-and-a-half of hospice we had at least three people because whoever was supposed to be his main contact was sometimes not available. And then the substitutes would say well, they couldn’t really compare to how he had been on the previous visit done by someone else. We called them late in the week to tell them he had clearly changed status and was going downhill. At this point we had expected there would be some form of more continuous care or visiting, but there was not. They said they would start daily visits on Monday. He died very early Tuesday morning, and no one was there with him.
This hospice was affiliated with a hospital, and I have always suspected that even though it was supposed to be nonprofit, they were taking on more patients than they could possibly serve. The change to make hospice care reimbursable through Medicare, where they get a flat daily rate regardless of whether they see the patient that day or not, seems to have had a negative effect on level of care. The hospital had offered palliative care in-hospital, and in retrospect I think that would have been better.
Barbara
You call hospice when you accept that you (or your loved one) is actually dying and will not benefit from and might actually be hurt by further intervention. For many people that realization is delayed by their own denial, the denial of their health care providers, or, sometimes, the financial conflicts of their providers. For all you know, it took Barbara Bush (or her children) that long to persuade her husband that yes, she really was on the verge of death and to stop pushing her to get more treatment.
MobiusKlein
@Tokyokie: You draw the line based on the patient’s advance directive.
For a long time, my mother in law lived with a pulse oximiter reading in the 80s, no O2.
By her choice.
Until she changed her mind.
Kelly
It’s hard to forecast the end. My first wife died at home of metastatic breast cancer about 3 weeks after the oncologist visit when he said there was nothing more to be done. She declined very fast. A hospice nurse visited once. It was mostly me taking care of her. I could do it and it was precious time.
Chyron HR
ICE FLOE
DEATH PANEL
OBAMACARE
SKREEEEEEEEEEE
Bostonian
@Sab: Hi Sab. My condolences. Right now our family is going through a bad patch with my mother. She recovered very well from surgery and went back home, but after receiving radiation and chemo lost so much strength that she had to go back to rehab. The hospital treated her like a hot potato even though it was treatment she received in that hospital that caused her debility. She tried a home health aide (on her own dime) but the agency sent her a real turkey who dropped her on the floor. The hospital then refused to admit her and bounced her out overnight to pay for therapy out of pocket. I have found that this is standard practice in the American health care system – the hospital’s reimbursement rate is higher for outpatients than for admitted patients, so they refuse to admit people. My mother is lucky she has savings and a supportive family, but other grannies are losing their houses over these shenanigans.
PhoenixRising
@Argiope:
I’ll add, as one of the family members who had to learn and teach those skills in the final 8 days of our mom’s life: The upside to the short hospitalization–again, for symptoms which appeared to be unrelated to the cancer DX–was that the 2 of us who aren’t nurses or doctors got some coaching from hospital nurses on how, why and when to do what caregiving acts.
I think that made the hospice at home days more tolerable for everyone, including the patient. But a longer hospice period wouldn’t have made anything better. Our mom’s life was too short, but her death was exactly long enough (8 days from seizure to natural cessation of breath).
PhoenixRising
@DanR2:
My wife talked to the hospice nurse who came after my mom passed, which was our only nursing visit in 5 days of home hospice. The nurse indicated that most of her end of life calls were to homes in which there was one person present, about 1/2 the time who had arrived to check on their dying elder to find him/her gone already.
So, YMMV, anecdotally this nurse who has worked in hospice in the Cleveland area for 7 years reports that half of home hospice patients Medicare has eased into the low-cost, low-meddling inevitable are dying alone.
Mel
@JMG: Thank you for sharing this. It’s an important reminder of how much more hospice is than just “comfort care”.
Hospice, short or long term, can be especially important when the loved one /caregiver of the patient does not have a support network to assist them emotionally or physically with the process of caring for a dying loved one. This could be due to age, distance from relatives /friends, or even the slowly encroaching social isolation that almost always develops for both patient and caregiver when a person has been seriously ill for a long time.
It’s not easy to see a person slowly dying, and sticking the course inevitably makes those who stay examine their own mortality and fears.
The sadness, anger, and grief that come with watching someone suffer, and also the frustration over the profound changes that illness can bring to a person’s mobility, mood, appearance, financial status and living conditions, and to the ability to “be their old self”, can cause a large portion of a family’s or couple’s support network to collapse or drift away over time.
Hospice workers are specially trained to walk with patients and caregivers through the process and stages of death and grieving. This is a different process and different mindset than that of hospital ICU staff / critical care staff. Each has its role and purpose, and each group is specially trained to do the best in their area of care.
Sometimes, even if it is just for a week or a few days, hospice care is by far the best choice.
Home hospice, when possible and appropriate, is the best solution in my opinion. A patient can spend their remaining time in a safe feeling place, with favorite things, smells, sounds at hand, pets nearby, loved one (s) there, and yet still have support, pain relief, and support for their caregivers from people who truly understsnd the process from a physical and a psychosocial perspective.
Gelfling 545
A friend of the family died from cancer last spring after one day in hospice. He and his wofe had inquired repeatedly before that but were told it was too soon by both doctor & hospice personnel.
Barbara
@Gelfling 545: This is very common. It depends a lot on the geographic region, as well as the willingness of physicians to use hospice. Nursing homes (at least in the past) have been notoriously uncooperative about transitioning patients to hospice care. One issue is that the Medicare hospice benefit is very rigid. Hospice is not just another provider. It’s an alternative to a lot of other types of care so it can raise all kinds of financial conflicts of interest. People who have money will often find that they are especially discouraged from using hospice because of their ability to pay out of pocket for other kinds of services, which they cannot be charged for once the hospice benefit is elected.
Kineslaw
I just went through helping a family friend who entered hospice. She was in hospice for three weeks and my feelings about it were pretty mixed. It was nice she was in her home and her family knew they would be there at the end. She had a nurse stop by twice a week and an aide bathe her three times a week. The hospice Chaplin also came a couple of times and a social worker came once.
Even with help, it was still an amazing amount of work, partly because A had open, cancerous sores that required lots of changing dressings, bed linens and lots of laundry. Her Sister-in-law and a friend of her son’s had to move into the house and getting A’s pain under control was difficult. I went over on a Saturday afternoon to relieve G, but A took a turn for the worse and I ended up staying for the next 5 days. The first two nights after the turn were unreal. We were having to decide what meds to push, how often and how to administer them, the first night all while A was able to tell us how much pain she was in. Finally on Monday the nurse came and started 24-hour care covered by hospice, which really helped those last 3 days, as everyone was wrung out.
Overall, I’m not sure I would recommend home hospice without a BIG support network that gets along. It was traumatic being unable to help someone enough while being physically and emotional exhausted. The whole thing left me grateful she had access to medical marijuana and thinking expanding access to assisted suicide would be a good thing.
Steve in the ATL
@Another Scott: @Another Scott: I’m not feeling the “Cheers” at the end of your comments today….
Mel
@dnfree: What an awful experience. I am so sorry that your family had to go through that.
Ab_Normal (at work)
My Mom (also COPD) did 10 months of at-home hospice, which wore two of my siblings to a nub; we moved her to in-patient hospice care to give them a break around Xmas, and she died just over 48 hours later. She had a Very Strong Opinion (no, not an old Scots lady with very strong opinions!) that dying at home was impolite. I can’t help but feel that we should have moved her to in-patient hospice sooner…
Juice Box
I’m a retired doctor. It’s hard to tell when someone is close to death. People can look great and drop dead the next day or look like skeletons and hang on for months. When I suggested hospice to my mother-in-law, the family was horrified and told her it “wasn’t time”. She went into hospice a few months later and died 2.5 years later. It’s really hard to predict and, on top of that, people often perceive of hospice as appropriate for the last few days. She eventually requested help with suicide and hospice stepped in and gave her terminal sedation. She had end-stage COPD.
One year I had four lung cancer patients. The two who were over 80 opted for hospice rather than treatment and the younger two opted for aggressive treatment. The 80+ ladies lived the longest. I shocked all of them by reminding them that hospice was an alternative treatment. Family also gets involved with the decision and it can take a while to get everybody on board.
WV Blondie
My father moved to California with his second wife in the summer of 2003. He passed away in his own bed in March 2007, of congestive heart failure brought on by his emphysema. He was under hospice care (they sent aides twice/week) for more than two years – because his wife was feeeeel-thy rich and on the board of directors of a major health insurance company. So she could more than afford to supplement the California state plan.
But she didn’t get rich by leaving money on the table … She made sure he got all the state-provided benefits before a dime came out of her pocket. Every six months the doctor would be amazed that he was still going and sign him up for continued care.
On the one hand, I was incredibly grateful that his life was as rich and complete as possible during those years. Somebody from my family flew to the West Coast almost every week to spend time with him; my employer allowed me to telework at least a week/month for almost two years.
On the other, political/policy creature that I am, I hated that resources were being spent on Dad – who didn’t need them – when so many others were struggling (since this was well before Obamacare).
Another Scott
@Steve in the ATL: Yeah, the closing is too automatic too often. Sorry about that.
But our exit is a part of life, and life should (generally) be celebrated.
Hang in there, everyone. Remember the good times.
Cheers, (truly!)
Scott.
Karen Potter
I have had family members die in hospice care; in all cases they required more care than family could give. My grandmother wanted to stay home, but grandpa had a heart attack shortly after her brain surgery and there was no way he could help her and heal himself.
Cckids
@Bg:
Late to this thread (damn left coast time)
When you don’t have the resources, you do the time & work yourself. My son died in 2015, after 5 months in at-home hospice. We had an amazing nurse who came once a week, plus an aide who came 3 times a week for bathing.
This, for a person who was on a vent, cath & colostomy, feeding tube, and with a stage 4 bedsore. And honestly, these services were like a blessing because it was light years beyond anything we’d had before.
The hospice agency was helpful beyond belief; especially in how they took over all
aspects of care- prescriptions, medical equipment, supplies, every doctor and specialist.
I hadn’t realized how the stress of wrangling all that had built up until it was gone and I could just concentrate my time and energy on being with my son. It made such a difference when he did pass, knowing I had been able to really be present with him.
jc
I think I would elect to have morphine. Why not go out on a cloud of bliss.
Re: Barbara Bush, if you can’t say something nice about someone … I’ll leave it at that.
Karen Potter
@jc: I find myself feeling pity for those who can find nothing good about Barbara Bush that all they can remember is her failings or faults; somehow it doesn’t say much good about a person who focuses on wrongs at a person’s death.
I had a blood relative die in hospice care, that person had pancreatic cancer and even the touch of sheets hurt; the youngest son put her in care one of the main reasons being the woman was a sadistic psychopath who tried to kill her younger sister and own daughter. He was afraid to care for her, she had abused him and he worried that he might do something to cause her even more pain and suffering. After her death this son discovered that she kept a diary of everyone that had done something wrong or that she considered wrong; she also kept track of the things she did to these people to “balance the books”
J R in WV
My dad had CMML Leukemia, was treated briefly at M D Anderson center in Houston as he mostly lived there after mom died to be with his grandkids. He had harsh chemo in the beginning, which enabled him to improve enough to be eligible for a clinical trial which worked very well for his leukemia.
But that initial chemo, which ran him as close to no immune system at all, in a sterile environment with filtered air and nurses and doctors in moon suits for 30 days was his downfall. It killed blood cells which were partly filtered out in his lungs, which caused scarring and COPD.
Of course COPD is both uncurable and nearly untreatable, eventually he had to give up his apartment and more to assisted living, and my brother and I visited several facilities near brother’s home. I think we did a good job, as the folks in the assisted living center provided great care and worked very well with the hospice people, who were stellar in every way.
I was able to take time off from work to spend in Houston with Dad and my brother’s family. There neear the end, Brother called and told me it was time I should be there, so down I went. We made a lot of flights from Charleston to Houston, thankful for the daily direct flight.
It was good to just sit with dad, once he neared his death he slept a lot, and was on morphine, so I watched TV with the sound off and held his hand. I was there anywhere from 12-18 hours a day. He was past ready by then, it had been a long time with medications, hospital visits, he was done fighting. Hospice depends upon the people who work for each individual organization, I guess the luck of the draw is in effect, like so many times. This one was very well managed, professional and compassionate.
It was managed by a Doctor who was Pakistani, and a devout Muslim who cared for everyone who came into his view.
Original Lee
The hospice affiliated with the local nursing home is, in my experience, very good. My father was in hospice for 5 days. He had Lewy Body dementia and his end-of-life paperwork had both a DNR and “no tubes” in it, so when he lost the ability to swallow, the transfer to hospice was swift and easy. The staff were all terrific. My grandmother was in hospice for 5.5 months. She was losing the battle with pneumonia, so her children put her in hospice. But, as sometimes happens, the palliative care actually helped her recovery, and a couple of months later she was back to playing Bingo and eating in the dining room. She never fully recovered, though, so when she went into her annual “I hate winter” slump around the end of Daylight Savings Time, she just continued going downhill until she stopped breathing. Hospice was wonderful; their main evaluative nurse was really good about keeping my mom and her sisters informed with timeline estimates. Grandma was lucid and comfortable until the very end and had just been gotten ready for bed by the aides when she passed. Both my father and my grandmother stayed in their nursing home rooms while in hospice care, and their roommates were temporarily transferred to other rooms when the end was near. I really cannot run out of good things to say about the facility and staff. Dad had Medicare and Grandma had Medicaid, and there was no difference in their care.