When should hospice discussion begin?

tewdles, RN · Jul 3, 2011

ahhhh leslie...when COPD pts visit their doctors (especially in the last couple years of their lives) they are not well.

we will agree to disagree on this, as I think that PCPs or their nurses should be having honest conversations with their patients who have chronic life limiting disease which WILL contribute to, if not cause, their deaths.

These are not easy discussions, but the patients and families deserve to have an understanding of their options and of the disease trajectory. Certainly these conversations should not kill the hope of the patients, but they should help the patients/families to make important decisions about what their goals are.

The data shows that many, many chronic disease patients spend a considerable amount of time in the hospital, often in the critical care department during the last year of their lives. Too often that happens because the patients and their families have not been asked the hard questions. Their default position is to admit and treat aggressively. And too many of these people die in those settings even though they may have preferred to remain in their home...they often do not even know that is an option. Those who die from their terminal but chronic diseases in the hospital often suffer considerably in their last weeks of life. They often have zero quality of life precisely because they are in the unit.

Of course, too many of those dying in the ICUs or general hospital rooms not only suffer, but the cost of their care is steep and generally does not promote comfort and dignity.

I wish my mother's doc had had frank discussions with her. In the last year of my mother's life she suffered considerably from her COPD. Her doc's plan was pulmonary rehab, and multiple hospitalizations. When I visited her around Mother's day I was alarmed by her level of decline. I phoned her primary MD and asked for a hospice referral...he told me that he didn't think my mom was "ready" for hospice. I had to ask him directly if he thought my mother was dying from her emphysema and he had a difficult time acknowledging that indeed she was. I asked him if he realized that she was suffering from this disease. I asked him what plan he had in place to palliate her symptoms and provide even a small measure of quality into her remaining life...his response included hospitalizations, bronchodilaters, and steroids. No opiates (even though she had terrible referred pain in her back) to combat her dyspnea. No benzo or similar to treat her extreme anxiety secondary to her dyspnea. No sleep aid, even though she rarely slept more than a couple of hours consecutively and those hours were in her recliner, not her bed. No antiemetics even though she was nauseated and vomited after her NMTs

The doc finally agreed to refer and my mom elected her hospice benefit before I returned home. Her hospice team worked hard and managed to minimize some if not most of her symptoms. Her quality of life improved significantly. She died 2 months after her referral...but she suffered terribly in the 10 months before that...it was heartbreaking.

Again, these are not easy discussions, but her doc should have been talking with my mom and dad about her goals and "bucket list". He should have been palliating her symptoms rather than allowing her to suffer.

The doc and my mom were friends, they had worked together for a number of years. I think that he was too emotionally involved to "go there" in a conversation.

I believe that this type of phenomenon is more common than it is uncommon. And thus we have elderly people, dying of chronic and life limiting diseases who are essentially tortured in the last months/year of their lives. They ultimately die in the hospital setting when many of them would have preferred to be in their home, surrounded by their family, friends, pets, and possessions.

Okay...that was quite a ramble and rant. Because I believe we CAN do better than we currently are in the care of these type of patients. It is part of my mission to impact this type of practice and perception.

MissIt · Jul 3, 2011

He should have been palliating her symptoms rather than allowing her to suffer.

I hope that one of these days it will be a regular thing for palliative care to be started earlier in the disease process for patients newly diagnosed with these types of diseases. Perhaps it would be "too early" for hospice if their symptoms were managed effectively. Unfortunately, there seems to only be the two options right now for too many people-- suffer and implement all available treatments or not suffer and institute comfort care only. If I'm ever diagnosed with a disease that I know will be both chronic and painful, I'm going to the hospital with a palliative care program in place!

leslie :-D · Jul 3, 2011

tewdles, i don't know exactly what part of my post you're disagreeing with.

however, i do and will always, palliate my pts, to extent possible.

i seriously hope i didn't give anyone the impression that i wouldn't. :confused:

and of course, pcps should be having these discussions w/pt and family, long before disease reaches its advanced stage...

absolutely!!

i just wanted to point out that even with education, pts and families have their very unique reasons as to why it'd seem that all this education, went in one ear and out the other.

there are circumstances, and ingrained values, and personal reasons, why eol care/hospice doesn't always happen.

actually, more often than not, which makes hospice so underutilized and actively avoided.

i admire your ideals, but maintain, that until western society changes its attitudes, confronting death will be a slow and arduous journey that benefits no one.

i still don't know what your concerns were, but hopefully i've addressed them?:)

leslie

leslie :-D · Jul 3, 2011

Unfortunately, there seems to only be the two options right now for too many people-- suffer and implement all available treatments or not suffer and institute comfort care only. If I'm ever diagnosed with a disease that I know will be both chronic and painful, I'm going to the hospital with a palliative care program in place!

i agree, that pall care needs to be aggressively marketed and implemented...especially with pcp's, who are the main treaters in a pt's care.

they should be recognizing the severity of illness and treating it accordingly.

i'm very grateful for my doctor, and recognize that not enough docs are like mine.

leslie

tgrosz · Jul 3, 2011

leslie, i understand what you are saying. it's not as though

you quit trying, it's that you know that your trying will often

be futile because patients and families are just not willing to

accept the inevitable no matter how much prior education/

consultation was done. it's very frustrating, and if you push

too hard you come across as being morbidly obsessed.

leslie :-D · Jul 3, 2011

leslie, i understand what you are saying. it's not as though
you quit trying, it's that you know that your trying will often
be futile because patients and families are just not willing to
accept the inevitable no matter how much prior education/
consultation was done. it's very frustrating, and if you push
too hard you come across as being morbidly obsessed.

thanks, tgrosz.

and while i feel eternally discouraged, i will never, ever back down from what i know as righteous.

(i think God gave me and others, a big mouth for a reason.)

there are a few docs out there, who avoid me like the plague.:)

leslie

Long Term Care Columnist / Guide · Jul 4, 2011

Growing up with a grandmother who had been a nursing student during the First World War, I formed my own attitudes toward death early on, and have never found much reason to alter them in the 40-plus years since.

I remember her explaining to me why, sometimes, death was preferably to lingering in some painful or humiliating state. She told me once that pneumonia was called the "old man's friend" back in the day before antibiotics, chest physiotherapy and so on became commonplace in its treatment. When a person developed it in the course of a downhill trajectory, she said, death was not only accepted as the natural outcome, but even welcomed as a deliverer because it meant the end of suffering.

"When your grandfather and I were young," she said, "death was just a part of life that happened to everyone at some time or another. It took the little children who were too delicate to survive childhood illnesses, and if you made it to old age, it came to live in your house, and sometimes you could feel it bite you in the behind."

This, to my mind, is a much more compassionate and realistic view of death....certainly more so than our modern way of flogging a failing body with our chemicals and our surgeries and our machines. Sometimes, dead is better........not that anyone should be in a hurry to get there, or to hasten another's demise for economic or other reasons; but when time is short and there is great suffering, it's nothing short of cruel to extend "life"---if indeed that's what it is---beyond the limits of the patient's ability and willingness to endure it.

Just my $0.02 worth...

LMTRN · Jul 6, 2011

That New Yorker article was terrific!

LMTRN · Jul 6, 2011

I am a hospice nurse that works in a local hospital, doing admissions and followups on current patients that come in.

The hospital system I work with has a "Quality of life" team. They have patients all through the hospital, but they sit in on the "grand rounds" in the ICU. The qlife team works closely with the hospice team, often referring patients to us.

The qlife team says there are "buzz words" for patients, and doctors routinely write for consults for them if the patient is: on a vent, over a certain age, multiple hospitalizations for the same issues. Not all qlife patients make it to hospice, but it's a good stepping stone.

Steeleworks · Jul 12, 2011

I have just about finished my book on hospice. In researching it, there is one study that is just getting underway that expects that over 1000K patients annually are DBA or Die Before Admission to hospice. One, literally in the ambulance from the hospital to the home.

Another study when I was just getting started in hospice found that 78% of patients who qualify for hospice do not get admitted.

The answer, similar but sooner than what Used Nurse said, we should be talking about it in our young adulthood. When people get closer to their mortality they are more reluctant to speak about it.

Even in nursing school, I was taught a number of misconceptions about hospice. Although this has probably changed, no wonder so few actually want it.

And the best part, every year in my last job, we would have to fire about 4-6 patients because they no longer qualify for hospice. Some have other terms for this but the bottom line, they got better with our care.

This is because hospice helps people live the last days of their lives. Some, a very few, perhaps just change their mind about dying.