End of life and Medicare

[Lainey]

A friend told me that her stepfather, aged 89 and in rapidly declining health, has now qualified for hospice care according to the local hospice agency. However, it's in-home care only, meaning my friend's 89 year old mother has to do the day-to-day care. Since he's already practically bedridden and frequently incontinent, she's exhausted.

Apparently, per Medicare guidelines, you are not eligible for a bed at a hospice unless you are within 2 weeks of death. (there are other criteria like, a minimal level of consciousness). My friend's stepparent has been given an expected range of 3 weeks to 6 months, so he is not close enough to dying to meet their criteria.

I had always thought that if a medical doctor deemed you as being likely to die within 6 months then you were eligible to be transferred to a hospice; however, seems like Medicare will only pay for 2 weeks.
Once again our medical system seems to fail those in need.

(I should note my friend works full-time and they are in a city 120 miles away, so she's not available to help.)

[iris lilies]

A friend told me that her stepfather, aged 89 and in rapidly declining health, has now qualified for hospice care according to the local hospice agency. However, it's in-home care only, meaning my friend's 89 year old mother has to do the day-to-day care. Since he's already practically bedridden and frequently incontinent, she's exhausted.

Apparently, per Medicare guidelines, you are not eligible for a bed at a hospice unless you are within 2 weeks of death. (there are other criteria like, a minimal level of consciousness). My friend's stepparent has been given an expected range of 3 weeks to 6 months, so he is not close enough to dying to meet their criteria.

I had always thought that if a medical doctor deemed you as being likely to die within 6 months then you were eligible to be transferred to a hospice; however, seems like Medicare will only pay for 2 weeks.
Once again our medical system seems to fail those in need.

(I should note my friend works full-time and they are in a city 120 miles away, so she's not available to help.)

That is a sad situation indeed.

Isnt public healthcare grand?

[iris lilies]

...But realistically, we all have to understand that Medicare covers MEDICAL treatment, not living-our- life situations.

Your friends have options through the publicly funded Medicaid program if they are without resources.

If they have resources, they are expected by Nanny G to spend their own resources before Nanny takes over.

This is not an argument just a comment: my mother was under hospice care for more than a year, but she was in a nursing home and was paying from her own resources, so of course Nanny G. Liked that situation. Hospice care is cheaper than agressive medical treatment.

[ToomuchStuff]

Did this many years ago, with my grandmother. It becomes full family care. A friend recently passed after his diagnosis (his diagnosis to death was less then 21 days). He was in Hospice the last 5 days because no local family. No situation is the same and beds were certainly scarce.

[Teacher Terry]

I don’t see anything wrong with using your own money until you need Medicaid. My grandma did that. In the old days the surviving spouse was left impoverished but the laws have changed and that’s not the case anymore. He needs to go into a home. That poor woman will end up dying from the strain.

[Teacher Terry]

She should call a social worker in the department of aging in their town and ask for advice.

[catherine]

Ugh.. New Jersey just passed assisted dying, and if I'm compos mentis at that stage, I'll sign up and save my family months of cost and hassle.

[Teacher Terry]

C, you won’t be in New Jersey.

[SteveinMN]

Isnt public healthcare grand?
Private is absolutely no better. A friend of DWs was discharged from the hospital to hospice at home with terminal cancer. They expected two weeks. She lasted for six, aiding herself by eventually withdrawing from food and water. There was some outside help for daily cares, but the rest of it was up to family and interested friends. It did take a toll on everyone. Private insurance.


She should call a social worker in the department of aging in their town and ask for advice.
Indeed. Possibly was assigned one in the hospital to make discharge go more easily. The hospital also might be a resource.

[dado potato]

Perhaps Lainey's friend needs to carefully review how Medicare eligibility is determined for a case like her stepfather.

As I understand it, a physician determines that the patient is terminally ill, with prognosis of less than 6 months to live, assuming that the illness runs its usual course.

The hospice benefit is 2 90-day periods followed by an unlimited number of 60-day periods. If 6 months of hospice care elapse, I believe the physician would need to recertify that patient.

I would have questions about the home health and hospice provider's capability. I may be naïve, but I would assume that to be licensed, a hospice service provider would need to demonstrate capability to deliver all levels of hospice care. Medicare recognizes 4 Levels of hospice care:
Level 1: Routine Home Care. The Home Health Care Aide provides specific cares and then goes away. At any point it may be determined that a higher level of care is needed.
Level 2: Continuous Home Care. The Home Health Care Aide(s) is present with the patient at home for 8 to 24 hours per day. The need for Continuous Care is re-evaluated every 24 hours.
Level 3: Inpatient. Circumstances (such as intractable pain, continuous vomiting, etc) may require the patient to be transferred to an inpatient hospice facility.
Level 4: Respite (for the caregiver). The patient is transferred to an inpatient hospice facility for period of up to 5 days to enable the caregiver to meet her own personal needs.

[razz]

There are a lot of questions that need answers in the OP's friends situation. Who did the evaluation? who decided on the in-home care? The caregiver responsibilities? How is the caregiver evaluated? There should be someone doing this service in the nursing field.
Dado's list is excellent and someone familiar, meaning knowledgeable, with the end-of-life healthcare issues needs to review the situation and provide the options available. This is not just a senior care issue but any end-of-life scenario.
Once the caregiver is unable due to exhaustion, who takes over?
Is the concern raised due to unmet expectations from Medicare?

[Gardnr]

A friend told me that her stepfather, aged 89 and in rapidly declining health, has now qualified for hospice care according to the local hospice agency. However, it's in-home care only, meaning my friend's 89 year old mother has to do the day-to-day care. Since he's already practically bedridden and frequently incontinent, she's exhausted.

Apparently, per Medicare guidelines, you are not eligible for a bed at a hospice unless you are within 2 weeks of death. (there are other criteria like, a minimal level of consciousness). My friend's stepparent has been given an expected range of 3 weeks to 6 months, so he is not close enough to dying to meet their criteria.

I had always thought that if a medical doctor deemed you as being likely to die within 6 months then you were eligible to be transferred to a hospice; however, seems like Medicare will only pay for 2 weeks.
Once again our medical system seems to fail those in need.

(I should note my friend works full-time and they are in a city 120 miles away, so she's not available to help.)

Hospice is a process not a place. "Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice care addresses the patient's physical, emotional, social and spiritual needs. Hospice care also helps the patient's family caregivers."

They should be able to get an in-home care provider. We had one for Dad. He and Mom did not want her to provide his personal care. We had an LPN in-home 24h/day once he was deemed terminal.

We could have had a provider with Mom too but my sister and I were willing to provide her care so that she would have family 24/7 like Dad did with her present. And she accepted.

[Lainey]

Gardnr,
there are a few in-patient hospice facilities in their town but the bed capacity is limited; the majority of hospice care is in-home.

I don't know much beyond my original post except that there's basically little to no financial resources. Their house still carries a small mortgage, and they have 2 older cars. I'm guessing that's a common scenario for married 90 year olds.

It took the mom a long time to agree that hospice care was needed - I think people underestimate the denial that's strong when you see a loved one slipping away.
Going forward the hope is that the social worker will be able to persuade mom to have an LPN for at least a few hours/day, if that's covered. But trying to navigate this is tough for anyone, much less a stressed and exhausted elderly spouse. I hope the hospice nurse will be proactive in monitoring to see if he's getting close enough to the 2 weeks so the mom can be relieved of her caretaking duties.

[Gardnr]

Gardnr,
there are a few in-patient hospice facilities in their town but the bed capacity is limited; the majority of hospice care is in-home.

I don't know much beyond my original post except that there's basically little to no financial resources. Their house still carries a small mortgage, and they have 2 older cars. I'm guessing that's a common scenario for married 90 year olds.

It took the mom a long time to agree that hospice care was needed - I think people underestimate the denial that's strong when you see a loved one slipping away.
Going forward the hope is that the social worker will be able to persuade mom to have an LPN for at least a few hours/day, if that's covered. But trying to navigate this is tough for anyone, much less a stressed and exhausted elderly spouse. I hope the hospice nurse will be proactive in monitoring to see if he's getting close enough to the 2 weeks so the mom can be relieved of her caretaking duties.

Hospice is a difficult discussion for anyone. I called Dad's dr and asked for a hospice consult. Once there, the RN case manager can take charge. The case manager should be willing to have conversations with you and you may well be very helpful to her/him. Consider that if you're up to it.

With Mom, I asked for the hospice/home care consult before we left the hospital. The RN case manager was at the house late that same afternoon.

They were both helpful and they do take care of and provide everything under Medicare. We paid for nothing-equipment, meds all provided. I think I had to buy attends and that's about it. Mom was willing to use them once mobility required a walker.

I wish you peace.

[razz]

Lainey, it is great that your friend has you to vent her stress. Trying to find the path ahead from a distance is very difficult in these situations when people involved are so tired and emotionally stressed.

[Teacher Terry]

When my friend was in a home and on hospice they wanted to stop all her medication except the anti-psychotic for her Alzheimer’s. She had most of her colon removed so if she didn’t have a RX powder to drink before every meal she had constant diarrhea. Which meant she couldn’t absorb the vitamins in her food. We paid for it ourselves. The nurse told me that they stop all chronic conditions medications if not related to what you are dying from. I would never go on it because without my BP and heart pills I would either have a stroke or be dead in a few weeks.

[Gardnr]

When my friend was in a home and on hospice they wanted to stop all her medication except the anti-psychotic for her Alzheimer’s. She had most of her colon removed so if she didn’t have a RX powder to drink before every meal she had constant diarrhea. Which meant she couldn’t absorb the vitamins in her food. We paid for it ourselves. The nurse told me that they stop all chronic conditions medications if not related to what you are dying from. I would never go on it because without my BP and heart pills I would either have a stroke or be dead in a few weeks.

We didn't stop any of Dad or Mom's meds. Not a requirement of Medicare or Hospice. That sounds barbaric.

[catherine]

This discussion reminds me of my frequent thoughts of how we live now as a matter of course vs how we lived a hundred or two hundred years ago. There were no meds. There was no hospice. There were no high-tech devices to monitor and keep people alive. People just died.

Was the act of dying worse or more horrible then than it is now? We depend on modern medicine to help us die. But was the act of dying qualitatively better or worse back then?

Thinking about my own relatives, I don't remember their dying as being a horrible burden on the family, but maybe it was. Fatal MIs are horrible, but we don't have them that much anymore, and at least they were efficient.

[Lainey]

Maybe when households were larger, dying could be managed by family members. But it seems our society has not adapted to today's very small households.
In the Hallmark movies, there would be a parade of younger relatives, neighbors, friends, and/or church members who would show up to help out; in reality, at the age of 90, most friends and siblings have died or are frail themselves, and younger relatives live far away. Neighbors come and go and probably don't even know the name of most people on their street.

I guess this is what saddens me about my friend's family: the stepdad is a decent guy, a veteran, no trouble with the law, paid taxes for decades, and all he wants is a clean place to lay his head and someone to manage his hygiene and any pain for the last 3 months of his life. I just don't see why Medicare has that 2 week rule, especially when there's otherwise no limit on aggressive medical care. This is backwards.

[razz]

In the early 1800's, the average life expectancy was around 40 due to loss during childbirth, childhood diseases, children working in coal mines etc. Source: Factfulness by Hans Rosling.
Now it is the high 70's to low 80's. We are prolonging life but the last stages for some and their families is traumatic and expensive.

[ApatheticNoMore]

There was always a last stage of life, people dying of childhood disease and childbirth didn't mean some people didn't (let's say 50% didn't but it was probably more) and therefore lived about the same lifespan they do now, and therefore there was always people dealing with a last stage of life, life expectancy is irrelevant to that.

[JaneV2.0]

Discounting childhood/maternal deaths, a lot of people lived well into old age in years past. The main threat was infections, as there were no antibiotics--you had to hope you had a robust immune system. Many of my ancestors lived into their seventies, eighties, even nineties.

I agree with Catherine that--for the most part--modern interventions around death haven't improved things much. As others have mentioned, there are generally fewer family members available now to minister to the dying.

[Teacher Terry]

G, I ended up firing that hospice because I specialist told them not to prescribe one anti-psychotic because it gave her terrible side effects and they did anyways when we were on vacation. When I got back her neck was stuck down and at a weird angle. They tried to tell me that the doctor knew best and besides that didn’t hurt. I knew otherwise from grad school. Glad to know Medicare and hospice doesn’t require that.

[Gardnr]

G, I ended up firing that hospice because I specialist told them not to prescribe one anti-psychotic because it gave her terrible side effects and they did anyways when we were on vacation. When I got back her neck was stuck down and at a weird angle. They tried to tell me that the doctor knew best and besides that didn’t hurt. I knew otherwise from grad school. Glad to know Medicare and hospice doesn’t require that.

I'm so sorry-that is awful!

I believe in death with dignity and making the person as comfortable as they want to be. Dad chose pain, interestingly enough. He declined morphine until about 10d before he died. Mom asked for 1/2 Vicodin nightly along with Ambien so she would sleep deep.

I don't like thinking that we were able to get what we needed when needed only because I'm an outspoken daughter/healthcare POA and RN? That would totally tick me off for everyone struggling with end-of-life issues.

[SteveinMN]

I don't like thinking that we were able to get what we needed when needed only because I'm an outspoken daughter/healthcare POA and RN?
In my experience — and unfortunately — that is how our system works. If you are not your own advocate or have someone knowledgeable to represent you, it’s easy to end up on the short end.

[jp1]

When my mother was dying and entered hospice care they had her continue her maintainence meds for diabetes and high cholesterol but didn't provide any treatment for the cancer that was rapidly killing her. She initially started as home hospice care, but on the second day she was trying to check her blood sugar using a ball point pen and couldn't understand why it wasn't working. (the morphine was already making her loopy). The nurse came back to help with this and judged her a safety risk since she was still ambulatory and got her admitted to the inpatient hospice.

I agree with Steve. People who don't have someone capable of being an effective advocate will get markedly worse care. There were several times in my father and my FIL's last 6 months and 2 years respectively where drastically different decisions were made by my SIL (dad's DIL) and my other SIL (FIL's daughter) who used their knowledge as RN's to question various treatments and suggest more appropriate ones.

[befree]

Hospice is wonderful, but they can't read minds. I'm willing to bet the wife in this scenario hasn't told hospice what a hard time she's having taking care of husband. The wife, or a designated relative, needs to frankly ask hospice for what they need. And ask family and friends; we can't expect the government to stand in place of a family. Well, we can expect it, but it's not gonna happen.

[sweetana3]

Befree, that is pretty much what I wanted to say. My mother-in-law would never ever have questioned whatever a "professional" of any kind told her. She would have tried to take Dad home with an dangerous and inadequate bathroom and 3 stairs into both doors of the house. She would not have complained but would have worked herself to a breakdown. (and she would not have told us which is another problem).

But, there is such absolute fear of ending up needing nursing care even if family can spend hours every day with the person.

[Lainey]

My friend's stepdad died yesterday. He had been moved to an "assisted living facility" (not a hospice facility) but had aides and nurses checking in on him. So at least he did not linger and was able to pass in some dignity.

[SteveinMN]

I'm sorry, Lainey, though it sounds as though Stepdad had a decent death.

[razz]

Thanks for the update. I am pleased that the family caregivers who needed the support of the assisted living staff received the respite in care responsibilities.

[Teacher Terry]

Glad for everyone that it’s over. No one wants to suffer.

[dado potato]

Hospice nurse Theresa Brown wrote an op-ed in the 4/28/19 New York Times, Making Doctors Think About Death.

Brown's criticism is that the medical profession lacks general treatment guidelines for when comfort, not cure, is most appropriate.

… might look like this: For patients who have one terminal illness that is either resistant to treatment or can't be safely treated, combined with a second very serious illness or complication, along with a high degree of physiological frailty, doctors should consider comfort measures instead of cure.

Brown observes that "health care has many financial incentives that encourage continued treatment, no matter how pointless. Liability issues arise too: Some doctors worry about being sued if they stop aggressive care for dying patients." A more fundamental problem is medical and nursing staff "lack of time" to consult with patients and their families about what is happening with the failing human body. "That difficult, time consuming work can be avoided by simply sending patients to ICU or to another hospital."

She says comfort care at the end of life should not be equated with "giving up". When cure is impossible... comfort care is the most compassionate, ethical route.

[SteveinMN]

She says comfort care at the end of life should not be equated with "giving up". When cure is impossible... comfort care is the most compassionate, ethical route.
I haven't searched, but I'm pretty sure that, some time ago, there was a thread on this site about "the good death" -- one marked by dignity and agency and not overrun by a medical system bent on healing individual conditions regardless of expense or of what's going on in the rest of the body or in the mind of the individual experiencing them. I know we've had several threads about how we treat our house pets with more compassion at the end than many of our relatives and friends are afforded.

I'm curious as to how end-of-life issues like this are handled in countries in which health care is provided through a single-payer plan, where there is little to no profit carrot (or, for that matter, legal stick) to prolong human life no matter what.

[iris lilies]

I haven't searched, but I'm pretty sure that, some time ago, there was a thread on this site about "the good death" -- one marked by dignity and agency and not overrun by a medical system bent on healing individual conditions regardless of expense or of what's going on in the rest of the body or in the mind of the individual experiencing them. I know we've had several threads about how we treat our house pets with more compassion at the end than many of our relatives and friends are afforded.

I'm curious as to how end-of-life issues like this are handled in countries in which health care is provided through a single-payer plan, where there is little to no profit carrot (or, for that matter, legal stick) to prolong human life no matter what.
Death panels.

[iris lilies]

Ok, I couldn’t resist. I am sorry/not sorry:~)

I am not sure that our pets are a good analogy because our pets cannot voice what they wish. You have to understand that a fair number of people make their own treatment plans. Do you think that they should not? Just playing devils advocate.

[catherine]

Another good thing about VT is they tend to have simpler solutions for things like death. When my MIL fell gravely ill on vacation, we took her to the local hospital and the one surgeon there encouraged us NOT to put her through surgery. At the time I was suspicious he didn't want his Friday night ruined, but in hindsight, he was truly looking after my MIL's best interest. She died in that hospital two days later.

I share your curiosity, Steve, about how death is managed in single payer countries. I think we also have this typically American attitude of "achieving" longevity, even if quality of life is poor. We haven't quite gotten the concept of quality, not quantity.

[Teacher Terry]

When I see my DIL on Thursday I will ask her how it’s done in Poland. If you are dying from cancer you literally have to carry your DNR with you everywhere you go otherwise they have to resuscitate you even if accompanied by a family member that tells them not to. Both my parents had them.

[SteveinMN]

You have to understand that a fair number of people make their own treatment plans. Do you think that they should not? Just playing devils advocate.
I love when people the scare-tactic term "death panel" is brought into the discussion. Some folks must have the idea that private insurance puts no limitations on the medical services they cover. Of course they do. Death panels already exist, at companies like United Healthcare and Blue Cross. It is inaccurate to believe that medical insurers never tell patients that they're not covering this treatment or that treatment, regardless of what the patient wants. So does it matter where the death panels exist?

America's attitude toward health insurance is ridiculous. Despite the highest medical costs in the world, most indicators of health in America are distinctly mid-pack. It would be one thing if the most expensive medical care by far had the best outcomes by far. But it doesn't. Meanwhile, that high cost is weaponized as the excuse for why single-payer health care cannot exist in the U.S. -- the only developed country that ties most of its health care to coverage provided through the workplace.

Certainly people can make their own treatment plans (though we're ethically hobbled when the patient's choice is to check out early). In most cases, though, someone -- either a gubmint bureaucrat or a less-visible minion in a cubicle somewhere -- decides what is paid for and what is not. Rarely is the patient paying entirely for their own care.

I hope for the day this country can have a mature discussion about options and outcomes, realizing that the pot of money used -- public or private -- has a bottom. Because pretending it does not leaves many people completely uncovered for conditions that, untreated, only become more debilitating and expensive to treat.

[razz]

Ok, just family as examples of death in Canada.

My parents came to the end of their life their mid 80's and their MD who had advised them of the care options possible heard their choices. They both died as they wished without a lot of interventions in the 1990's. Dad died at home which had been modified to suit his health needs. He was pretty independent but declining. He simply had a severe stroke or similar and fell out of his wheelchair and died. My sister was available to help care for him if needed.

Being alerted to her decline, I had cancelled all commitments and driven up to spend the Saturday with my Mom reviewing her rich and adventurous life. Sunday she was very drowsy so I went home. The following day she asked my sister to take her to hospital. Once there, Mom told my sister to go home and the hospital would notify her when she died which occurred within about 10 hours. No extensive interventions in their lives at 84 years of age. They were both outspoken and clear about their wishes which were respected.

DH had surgical care to prolong his life including radiation and chemo for his lung cancer. When he said that he had enough chemo treatment, that choice was respected. On our last visit to the hospital when DH had very acute difficulty breathing, I emphatically stated that he definitely did not want to be resuscitated as we had discussed this years ago and recently to confirm that was his choice. He could not talk at that point. The physician came in, asked me twice and each time I affirmed that DH did not want to be revived. The young nurse emphasized that DH had nodded his head vigorously when she asked him earlier to confirm the DNR on his chart. Immediately he was moved to a quiet room with sufficient morphine to ease his breathing and he passed away about 6 hours later at peace. His face was so serene.

Is my family the norm? I don't know that but I do know that when directions are expressly stated and confirmed, they are followed.

Part of the problem that I hear about is that so many people don't have the necessary conversation about their choice of death which leaves the medical community in the position of striving to prolong life with interventions until a decision in made.

[Gardnr]

Ok, just family as examples of death in Canada.

Is my family the norm? I don't know that but I do know that when directions are expressly stated and confirmed, they are followed.

Part of the problem that I hear about is that so many people don't have the necessary conversation about their choice of death which leaves the medical community in the position of striving to prolong life with interventions until a decision in made.

Dad was diagnosed terminal in 1994 March. He opted to go home, take no treatment. Home care and hospice. In home care when he was approaching the end of his 4 month dying process.

Mom was diagnosed terminal in 2007 November She opted to go home, take no treatment. Home care and hospice. My sister and I provided her in-home care. Medicare covered all her meds and equipment. The only thing we paid for was attends when she was ready for them. Final Medicare statement after her death? $2876. The cost of 7 weeks.

Each of my parents had a living will and Durable Power of Attorney for healthcare. Neither were challenged. Death with dignity is possible in the USA (and at low cost) and has been for a long time.

It is very important that all family is CLEAR on the expectations of family members. It is also important that family not want the ill person to be lying in a very expensive hospital bed.

The problem in the US is that the general population wants LIFE at all cost. No matter what "don't let XXX die"! go to surgery! go to the ICU! put the tube in and ventilate!

80% of healthcare dollars in the US are in the final 30 days of life. This is not discriminated by age or situation. It's the newborn, the preemie, the very old, the trauma victim...I've worked in the OR since 1981....you can't imagine what I've seen. It's not heroics, it's a travesty. Demanded by families who can't let go.

It's one of my soapboxes.

[iris lilies]

I know Gardnr’s experience with long drawn-out deaths is real because I hear the same reports from my relatives in the healthcare world.

All 4 of our elderly parents died a natural death, not prolonged, not suggested to be prolonged by either physicians or family. But we are all practical in life so placing comatose granny on life support or “doing everything possible” was not anyone’s plan.

[ApatheticNoMore]

Demanded by families, hmpf whatever. What if the person gave as a request to keep them alive. Then you think families should not honor the person's wishes? Are living wills only to honored in one direction basically? Oh is it just "blame family" because one doesn't really know why families are making the decision.

I have always found the discussions of such things on this forum to be complete and utter nonsense. I have not found doctors to push to extend life. No they push to end it when it's time, they just don't force one too, at least not right away (probably eventually), is the argument they should right away?

I find no correspondence to reality of this discussion at all.

[JaneV2.0]

My father had a prominently posted DNR. When he had a major stroke, my SO* (!) and I were called in and asked if we wanted to withhold treatment, water, etc. We suggested they ask him what he wanted. Turns out he wanted to live. You don't know until it happens.

*When they were trying to determine Father's competence, a doctor asked him how many children he had. His answer didn't seem right, being one too many. Further questioning revealed he was counting M, my partner. My father wasn't the demonstrative or openly sentimental type. I still tear up, remembering.

[Teacher Terry]

My father had a big stroke at 59 and my mom with some help from me cared for him at home for 14 years. At 73 it became too much so he was transferred to a VA hospital for a week and then he was supposed to go to a nursing home. They discovered he had a banana sized aneurism in his stomach and wanted to operate. We said no as he had been asking God daily to take him for the last 10 of those 14 years. Plus he had severe emphysema and at 6” weighed 90 lbs. He was not competent because the stroke left him with major brain damage. After we left the hospital tried to talk my dad into signing the paperwork for surgery. He always said he wasn’t going to a home. He asked me what day he was being transferred and died 2 days later before going.

[Teacher Terry]

My mom went through a bout of stage 1 breast cancer at 78 with surgery only. Then at 84 same thing for colon cancer. Then at 87 she gets lymphoma so the cancer is on her stomach, liver and colon. She had pain especially after eating. She wasn’t going to get treatment but they convinced her to do chemo. She lived until almost 90 alone but at times very sick and my 2 retired older siblings would stay with her for anywhere from 1-4 weeks at a time. I used up all my vacation and sick leave to fly there and help. A month before she died they sent her to a radiologist who said she would only live a month yet wanted her to do daily radiation. I said is that how you want to spend your last month. She didn’t do it. A week before she died she fell and couldn’t get up. Didn’t have her cell phone in her pocket like we told her so she laid in her own waste for 24 hours until her sister that lived across the hall checked on her. That was a awful death.

[Gardnr]

Demanded by families, hmpf whatever. What if the person gave as a request to keep them alive. Then you think families should not honor the person's wishes? Are living wills only to honored in one direction basically? Oh is it just "blame family" because one doesn't really know why families are making the decision.

I have always found the discussions of such things on this forum to be complete and utter nonsense. I have not found doctors to push to extend life. No they push to end it when it's time, they just don't force one too, at least not right away (probably eventually), is the argument they should right away?

I find no correspondence to reality of this discussion at all.

Um, OK, whatever. You have obviously NOT witnessed family members talking over the patient who says NO but browbeating them into saying yes with their shouts and wailing over the information offered by a surgeon and/or specialist.

Again, you cannot imagine what I have witnessed in my career.

[jp1]

Death panels.

While that term certainly causes volatile reactions I think the reality is that we need to consider placing limits on what treatments will be offered depending on the patient's particulars.

Initially, though, at least rather than shove those "death panels" down people's throats probably a better plan is like Minneapolis or some other city (sorry I don't remember where) has done where everytime anyone goes to the hospital they are asked if they want to create living will documents expressing their desires if things go south. The result being that people have to think about their own mortality when it's still an abstract concept.

But eventually we need to decide, as a society, that people who are 90 years old or older, (or whatever we decide is the right age) should not have cancer treatment, not have blah blah blah treatment. It just doesn't make sense. The money spent is a waste. The patient most likely has no hope for any sort of quality of life. I was agonized when a dear friend's grandmother (94 years old) was diagnosed with brain cancer after she had fallen and ended up in the ER. She agreed to surgery and died on the table after several hours. I get it. No one "wants" to die. And no one's loved ones want to say "grandma, you're old, it's time" but at some point it IS time. I can only guess how much that brain surgery cost, but F*** what a waste of money and needless suffering.

Personally I've made clear to SO that if my life before the acute situation was bad and the treatment will not do better than get me back to where I was before the acute situation that I don't want any treatment beyond palliative. I'm only 51 so hopefully we're still a long way from him having to make that decision. But I hope he follows through with my wishes. My dad would've been better off if the rapidly developing pneumonia had killed him inside his assisted living apartment where no one would've found him. Instead he collapsed in the hallway and got sent to the ER in time to be saved. Only to spend the next 6 months steadily declining in abject misery before finally passing away.

[Teacher Terry]

Totally agree JP and G.

[pinkytoe]

Before medical directives were prevalent, my mom suffered a massive stroke at 67 that sent her to a nursing home (Medicare paid whatever was allowable at the time) where a feeding tube was inserted. Every couple of months, she would get pneumonia and her primary care doctor would order antibiotics and she would get better. She laid in that bed with a feeding tube for two plus years without moving or opening her eyes and I watched her hair grow long and white. There was nothing I could do to let her go... until one last pneumonia occurred and all my siblings happened to be in town. We made a plea to the doctor to not administer drugs and for some reason, he finally complied. She passed quickly but to this day, I am so regretful that she had to suffer like that. I know she would not have wanted to be seen like that for days on end when there was no hope of recovery.

[dado potato]

pinkytoe,

Thank you for sharing that story. I feel sad about the manner of your mom's death. I would fight against the tendency to regret it.

Edith Piaf encore regrette rien … originally her lost love, then addiction, then the bearded legionnaires' failed coup d'état in Algeria... now her song is an anthem for the ages.

http://www.youtube.com/watch?v=fpHAsb2XQOY

[catherine]

Great song, dado. Great message. I love Piaf. Thanks for sharing it.

[razz]

Great song, dado. Great message. I love Piaf. Thanks for sharing it.

I finally got a chance to see the English translation and have to say that I feel the same way. Piaf was a remarkable unique singer.

[Gardnr]

But eventually we need to decide, as a society, that people who are 90 years old or older, (or whatever we decide is the right age) should not have cancer treatment, not have blah blah blah treatment. It just doesn't make sense. The money spent is a waste. The patient most likely has no hope for any sort of quality of life. I was agonized when a dear friend's grandmother (94 years old) was diagnosed with brain cancer after she had fallen and ended up in the ER. She agreed to surgery and died on the table after several hours. I get it. No one "wants" to die. And no one's loved ones want to say "grandma, you're old, it's time" but at some point it IS time. I can only guess how much that brain surgery cost, but F*** what a waste of money and needless suffering.

My worst experience was going to the ICU one night to get a 99yo woman for a craniotomy to remove a clot from her brain. She was debilitated and completely dependent for all her needs prior to the fall/injury. The surgeon had strongly recommended NOT going to surgery. Upon my arrival for transport, the family members will still SCREAMING at him to "save her no matter what". It was horrible. She died on our table.

Having worked trauma shift for nearly 10 years, there are too many to count. I don't believe in heroic measures unless the patient is a minor.

And more important than anything is: Quality of Life not Quantity of Life. I so admire each of my parents in their choices to LIVE their final months instead of being super sick through treatment just to add months. (neither were curable). They taught me grace to the end of life.

[Gardnr]

FYI: It has been a requirement for many years, that when you admit for services at the hospital, you will be asked if you have a living will. If you say no, you must be offered the form. I've had patients complete them in my lobby prior to entering the preoperative area. I've had patients delay surgery back in the day when 2 witnesses were required and I had to find 2 people who would NOT be providing their care and were willing to sign as a witness.

Living wills are so very important. And don't forget, initial/date them every year or 2 so that your requests remain current. Better yet, if you travel in your car a lot, keep a copy in your glovebox.

Mine is in my chart at my current employed facility. Everyone in my family knows this!

[SteveinMN]

There was nothing I could do to let her go... until one last pneumonia occurred and all my siblings happened to be in town. We made a plea to the doctor to not administer drugs and for some reason, he finally complied. She passed quickly but to this day, I am so regretful that she had to suffer like that.
Our handicapped family member was in the ER recently for pneumonia, which, for him, will require months of recuperation. He is already listed as DNR/DNI but we were surprised that the doctors mentioned the option of DNH: "Do Not Hospitalize".

DNH can run a gamut of choices, from "do not take me to the ER [optional: for <list specific conditions>]" to "take me to ER but no <fill in treatment you don't want (intubation, vasopressor, etc.>)" to "take me to ER but do not admit me to the hospital" and further. Interesting approach to agency in medical care. We haven't yet been able to talk with Family Member to determine where he wants to draw his lines (long story there) but it certainly has engendered discussion among his immediate family on what he might want as indicated in past discussions/his directive.

[Teacher Terry]

I asked my DIL how Poland handled this and no different than the states. My dad handled it right and my mom did until her last bout of cancer. I hope I do better.

[dado potato]

The 5/12/19 edition of the New York Times contained 8 letters to the Editor concerning nurse Theresa Brown's op-ed piece I commented on above.

David C. Leven pointed out existing guidelines, such as The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life.

There is a lot to chew on at the Hastings Center website!

Advanced directives tend to be either too general to be useful, or too specific to deal with the issue that needs to be decided in a particular case. In some (but not all!) states, a complement document, POLST, has been adopted by the medical profession. A Physician Orders for Life Sustaining Treatment form is completed and carried by the patient, and is more informative than a simple Do Not Resuscitate (DNR) request.

The website identifies the level of adoption of the POLST paradigm in each state. On a map you can click on your state (or Mom's or Dad's) and see how far along that state has come.

http://www.thehastingscenter.org/briefingbook/end-of-life-care

[nswef]

Thanks dado, I couldn't figure out how to find the map to see how the state of MD rates, but did just have an appointment with the POLST person at my dr. office and we filled most of it out. My husband isn't happy with my decisions - but I've told him it's my choice. I have the big red folder/envelope to stick on the refrigerator, but haven't put it there yet. The questions are more specific.. I went with NO TREATMENT and wonder if that's too much. But we live 30 min. from a hospital...EMTs arrive within 5-10 minutes to the house, maybe faster but I truly just want them to let me die. I am 70, healthy and don't foresee any real issues. But I am still thinking that CPR might be something to have done...or not!

[dado potato]

I couldn't figure out how to find the map to see how the state of MD rates!

The state-by-state comparisons are sort of buried.

I am glad you mentioned it... I should have put a link in my post, like so:
http://polst.org/programs-in-your state/

I see MD is "non-conforming", because I gather that completion of a POLST form is not "always voluntary". The website was not specific about Which medical conditions would make it mandatory to complete a POLST form. <Inquiring minds want to know!>

[rosarugosa]

Just when you think you have completed all of the forms - will, POA, health care proxy, advanced directive, you find out there is another one! Good grief!

[nswef]

Thanks for the link. I think Nursing Homes have the right to demand MOLST...Probably all about money! Most things are!