End of life healthcare ... can more be done ?

My Mother died a few months ago.

She had stomach cancer. It was misdiagnosed as "womens troubles", that's how her symptoms presented, it wasn't caught quickly enough in the screening/tests that the hospital carried out. By the time the tumour was found it was too late to cure, apart from some radiotherapy & chemotherapy to reduce its size and to give my Mother some more time.

Mom had agreed with my Father when they were young that if either had a terminal illness, that they shouldn't know about it. My Father knew for 2 whole years that äiti's tumour was irrecoverable, he kept that from her and us for that whole time.

But they'd also agreed that each should die at home. And that was a promise my Father couldn't keep. We all wanted her to come home because it was clear she was soon to die. She didn't really need to be in hospital, sure they were monitoring her but she was self-dosing with morphine ... and she could have done that at home. We just weren't strong enough to ask, or demand, that she be taken home and treated there instead.

There was no-one at the hospital who could help us navigate their system & the ethics of dying, what was available, whether Mom could die at home. I wish we'd asked ... I so wished we'd asked.

It's always going to be on my conscience that my Mom died somewhere she didn't want to be.

My Father has made me promise that the same won't happen to him when his time comes. He wants to die in his own home, in his own bed. I got talking, sensitively, to a few of my older relatives and they all want the same ... they want to die at home, where they normally sleep. And none of them want anyone else to be present, they all want to die alone too.

I've seen animals do the same thing, they know their time has come & they go away to die. Is that something we share too ? To go away, to die unseen ? But in our own space ?

What do other ATS members think about end of life care in their locations ? What is available, what do their relatives & themselves want to see happen when the time comes ?



(edit to remove some personal details)

[edit on 21-3-2010 by Ulala]

o i paln to do taht my self die alone and theres a good reasion for this dieing is hard enough for the person i cant immange how much harder it is on the loved ones .
no i take that back i can if my son died god forbid it would destroy me .

If I know I am on deaths door and there is simply nothing stopping it, I think I would prefer to be at home surrounded by family and friends if possible. Home would be preferred. I think if there truely is nothing more that can be done, if its possible, the Docs should ask if the family if they would like to be brought home to complete process.

Honestly though, I hope to be in a senario of where if I am dying, they can simply stick me in a freezer and perhaps give me a second chance in a hundred or so years...kiss everyone goodbye and be carted off to be flash frozen and held in stasis

I know almost beyond a shadow of a doubt that cryogenics will pay off in the long run, so I become upset watching people simply give up and die, then choose to rot in the ground verses get a second chance.

a second chance to what? a 100 years later ???
man you ahvent thought taht through have you.
no family no friends the whole worlds a stranger to you.
heck let the tek keep adavancing you will be like a cave dude throun into a moderen city.
immange looking for a door seeing nothing but blank walls now immange farther the md goes to the wall touches and a door shaped hole appers
now you think i can do taht so you touch the same spot he did but NOTHING happens because the wall doesnt know you.
not me no thanks have a grand time trying to understand a world 100 years more adavanced were you cant tell whats the human or whats the cyborg or whats the robot

reply to post by xxcalbier


WOW!..............So hard to read your post!

Anywhy my pennies worth, I have always wanted to be in the best place possible IF anything was ever to happen to me and NHS is somewhere I would want to be. I think we are lucky to have NHS sometimes they get things wrong BUT hey! we are human, it happens!

I have to pay NI in my pay and do not NOR get angry about it, it's less of a worry on my mind knowing my health will always be dealt with whatever.

No-one likes change .....

reply to post by xxcalbier


Hi

I value your thoughts but am struggling with how you express them, English is not my first language, could you possibly use standard English in order that I can understand what you're saying ?

Thanks so much

reply to post by Ulala


Ulala - Well said...............

Understand people trying to translate but this is bad!

Ulala; I am very sorry for your loss. Several years ago the exact same thing happened to my father. I was already in health care, but was unaware of specific rights. The short story is this: I started a company in Fort Worth that specialized in the last few days or hours of life (continuous care) as opposed to hospice's general six month or less philosophy. In ten years we have been able to care for over 60,000 patients and their families in multiple states. However, the government has fought me every inch of the way to the point of near extinction. Earlier tonight I was being forced to consider the ramifications of bankruptcy. Even though the law clearly stated from the very beginning that this benefit had to be offered along with three other "core" programs if a hospice wanted a license, it was denied by over 99% of all hospices before we had the privilege of getting started.

Regulators turned a blind eye to this unconscionable abuse, and in fact actively interfered with our passion to offer it. Through the grace of God, we eventually got new legislation, but the cost has been perhaps too much. I personally had to sacrifice my mental health (SEVERE clinical depression, anxiety, etc) and physical health (very high blood pressure). The good news is there are now many, many competitors who did not have to wage the extremely expensive battle for their right to provide care, and now 99% of hospices actually have to offer the program or lose the patients to another hospice that will do it if they don't. Unfortunately, thanks to the government and one particular bank it looks like we won't be one of the surviving providers. Several times I was told by those same competitors that if I couldn't beat the government for them, they would just go get other jobs but they would not contribute to the fight. It was an unbelievably difficult battle.

Back to the good news. A hospice is now mandated to allow the patient the right to choose where they die. In addition, if a hospice denies that right then a formal (and even confidential, if preferred) complaint to your local state health care "hot line" can result in hefty fines or even a possible license suspension. The federal government actually got this part of the hospice benefit right. There are still numerous obstacles involved which can limit availability such as number of hours provided (minimum of eight per day), discipline of care (at least 51% of care must be rendered by a licensed nurse), etc, but a good hospice now has the tools to make continuous care available for any patient they choose to. As I mentioned above, if they choose not to, a family or patient can now simply demand to "revoke" and pick another hospice that will honor their wishes.

I realized a very long time ago that no patient will ever know who we were and what we were fortunate enough to get the government to provide, but at least each and every one of the patients and families that do receive the program will be another opportunity to honor my father's life whether they know it or not. I have met and known some of the finest human beings on earth (caregivers) and have seen and heard some of the greatest untold stories of all time in the form of peaceful passings at home instead of the cold and sterile environment at a hospital.

I encourage you to investigate if your mother's passing might necessitate a formal complaint. Again, I am sorry we couldn't be there for her, but there was a program available. The final thought is simply that regulators continue to wage a war for the impunity to squash this benefit. I wish everyone the best and hopefully when it comes time for each of us to face this situation in our own lives that the government has by then moved on to another windmill and lets our loved ones have the peace of mind we deserve.

First off, sorry to hear of your loss and the problems you faced leading up to it.

Here in the UK, the NHS/DoH are now running a program of ''End of Life Care at Home'', it is in its infancy at the moment and I believe a lot of money has been put aside for the program.

On a slightly different tack, I am a Registered Nurse working in a Criminal Justice facility and we are embarking on an in-house Palliative Care program, as the inmates actually see 'their prison' as their home.

regards
Wotan

I'm interested to learn about the initiatives that you guys mention in your own countries. That's a great step forwards, I hope the funds can be made available to make this a priority.

I know that in the UK there are many hospices available for end of life care, but most, if not all, are exclusively funded by charitable donations. So it's good to see, Wotan, that efforts are being made in the UK for the state system to shoulder some of the burden when it comes to improving the way we spend our last days.

Samstone, you sound like you've been through the mill with your battle to provide end of life care in your state/nation. I can't imagine how you feel right now, having fought the battle to provide end of life care and now seeing the competition succeed at your expense, and that of others too. I can only hope that your efforts won't go unrewarded & that your business pulls through & that your own health, wellbeing improves.

It's folks like you & Wotan who inspire me, if I'm honest. The care you guys provide is invariably unseen & seldom rewarded to the extent it should be.

I can't thank you both enough for what you do.

I live in an a relatively isolated area that has a population of approximately 100,000 people. The Hospice here is a joint collaboration of the NHS and a Charity. Fund raising wise, it is the most funded charity in the area, before any National Charity.

The UK NHS has been embarking on Community Care projects for awhile now and the End of Life at Home project is a part of this. The Government has put a lot of money into training/recruiting Macmillan Nurses and Marie Curie Nurses, but as you can guess, it all takes time to put together. In addition, they are adding to the District Nursing Team, Nurses trained in End of Life Care.

In the Criminal Justice facility that I work in, we are hoping this year to start Palliative/End of Life Care within the Inpatient facility on-site. As you could guess, it would cost a lot of money and be a security nightmare to have to send an inmate 'out' to a Hospice. Inmates themselves would prefer to die in their 'home' (Prison) just like most people would like to as their friends (fellow inmates) are close to hand.

regards
Wotan

Thanks very much for this thread. A few months ago we lost an elder relative to whom we were very close. Lessons learned?

1. Here in California in the U.S., it is essential to fill out a legal document called an Advance Health Care Directive if you want certain types of care (or want to say no to certain types of care) if you have a health crisis or have been told you have a terminal illness, and expect to die in the near future. Here is a link to what that legal document looks like in this state:

ag.ca.gov...

Elders are not always willing to fill out paperwork, however, and that is what happened in our case. Our frail elder consistently said no to filling out an Advance Health Care Directive. Her final illness began suddenly, hours after she had asked to be taken to a local favorite restaurant of hers for breakfast on a Friday...6 hours later, she became nauseated, started spitting up, and over the weekend kept telling us by phone that she was starting to feel better. On Monday at 6am we arrived for our regular weekday morning walk with her, but she then confessed she did not feel strong enough to walk outdoors. It further turned out that she had not been able to keep much food or drink down over the weekend. At 9am we called her doctor's office to make an appointment for her to be seen at 1pm, but she took severely ill before then, so we had an ambulance take her to a local hospital. She eventually died within 24 hours, but painlessly.

In hindsight, the emergency measures we approved at the hospital (a breathing mask and a ventilation machine) kept our elder alive long enough for the family to gather at the hospital Intensive Care Unit to say goodbye to her. We are grateful for that grace period of time. Her death was thus a shock to the family but not a complete surprise.

Everyone's situation with a family death is different, but it does help to be legally prepared to carry out the dying person's wishes.

After 2 churches never returned our phone calls about burial ceremonies, our family decided to not have a religious official present, and we conducted our own simple graveside service, where family members took turns speaking of the elder as they remembered her during their lives with her. It was simple but powerful. Do not be afraid to do something like this for your own family members; it gives us such peace of mind that we have no regrets about the do-it-yourself burial service we conducted at the cemetery.

[edit on 3/23/2010 by Uphill]

Blessings and love to you. Sorry you had to go through this.
I hope you continue to help others understand. I think it is a crime the Gov and big Corps have so much control over our rights to die at home.
I appreciate Sam's work to make things better ! I am in the field of elder care and it is very frustrating to deal with intrusive regulations and big-money organizations. We as individuals tend to avoid this subject, but at our peril. Hospitals at the very top levels are the same as banks, trading facilities like derivatives, making big money like some game, it is a horrible system. IMO. I urge everyone to make advance plans this week or at least this year !

Just wanted to thank everyone for participating and the kind words. I so deeply believe in the importance of this subject that I almost never get down from the soap box.

Uphill is correct in asserting that the Advance Directives forms should always be filled out and on hand. In fact, there are almost always a "comments" or additional information portion where a patient can clearly spell out their desires to be home or other items they deem to be personally important. These directives will include a durable power or attorney (for medical purposes), and a Do Not Resuscitate (DNR) form. I do want to say that just because a patient is on hospice care, legally it does not mean a caregiver's responsibility to provide "extraordinary means of resuscitation" have gone away. Unless directed otherwise in this type of document, a nurse, doctor, or other medical professional is actually mandated to try to revive patients if possible.

My best again to you Ulala, and I hope and pray for nothing but the best for all.