What does everyone believe constitutes comfort care?

Our mom did not formally go on Hospice. She wasn't ready, they said. It is totally up to the patient. As long as they are conscious and have an opinion, it all goes by their choice. So in August, hospice was a NO.
Come October, mom had yet another stroke. Could not even open her eyes. Heartbeat was totally irregular. The Nurses said all meds were DC'd except Roxanol (morphine). Now that is pure hospice mode, whether they are actually involved or not. They only gave 2mg every 4 hours. That won't euthanize anybody, but it takes away the pain and muscle spasms. That is comfort care. Yes, she died that night, but she died in comfort.

My mom died this year of end-stage Alz. She had been under hospice care for over 2 years. All of the drugs she had been on for her dementia were stopped and except for antibiotics need for infections (usually UTI's) she basically was just taking morphine for pain control. Through our hospice, here in upstate NY, she also got massages and anything else to make her feel better. The morphine certainly did not hurry her death, but it did remove some/most of her pain. She was totally bed-ridden and non-verbal for about a year. At first she would eat but as the disease progressed she no longer wanted/needed to eat. In fact, she would open her mouth and just let everything fall out. As I was told, at her stage she was simply dying and that often they no longer are even able to eat of digest food, and trying to make her eat only caused her more pain. No one wants that! So we let nature take it's course and she died peacefully in her sleep.

I had no personal connection with this lady just shared a hosp room with her. had no conversation because she was very deaf but overheard everything the Drs discussed with her in terms of her options. She is 82 and did not seem in any way mentally impaired. I did mention to one of the RNs what I had overheard and what she and her family expected from "comfort care" I certainly felt a social worker should have been involved.

On a different subject just raised. Hospice usually continues medications related to the patient's admitting diagnosis but an effort is made to reduce the number of different medications the patient has to take. For example cholesterol lowering drugs may be eliminated and others changed to liquids. As Windyridge said infections can still be treated such as UTIs or pneumonia but often the family will choose not to use them and just let nature take it's course. Pain and symptom management are the goals, rather than heavy sedation and hastening the end.
There is a great deal of misunderstanding about the use of liquid morphine for hospice patients with difficulty breathing. Everyone knows it is a respiratory depressant, however when a patient is gasping for breath it is very useful in fooling the brain into thinking the breathing is perfectly comfortable. It is also a very useful pain reliever and being a small amount of liquid can be dripped into the mouth of even a semi conscious patient where it will be directly absorbed.
Hospice staff are always happy to talk about their services so never be afraid to give the hospice office a call and arrange to talk with a representative.

Sunny, good question. There is no set time that prescription meds are ended for hospice patients. A UTI might continue to be treated for example, because it gives the patient relief from nasty symptoms. Heart and blood pressure meds may be discontinued if they add nothing to the patients comfort. Patients and families must accept that the person is dying and try to make their passing as painless and comfortable as possible. It's handled differently depending on many factors. It can be very hard for some family members to let go. They want one more hour or day to talk to their loved one. But at this point, we need to understand that the needs and comfort of the dying loved one are the first priority, not the emotional needs of a relative to have a last conversation.

Sunny, my Mom went off her prescription meds the day that hospice started.

When does the patient go off prescription meds, like those for cholesterol, and just take those for comfort care?

What do I believe constitutes comfort care? Making sure the patient is resting peacefully without pain.

My Mom is in hospice, bedridden she is still being offered food but rarely does she eat [an Aide tries to feed her] and takes only a few sips of Boost. She is off of her prescription meds and she gets pain med as needed. She is pretty much starving herself but nothing will make her eat again and it is in her Medical Directive that she signed that no extra measures be taken, it is just time for her to finish her final chapter... and be comfortable doing it.

I think part of the problem lies in the inability to point to a firm prognosis for people dying of old age. Those who have cancer or ALS or some other terminal disease have an idea of the limit of their days. Their last months, weeks and days generally follow the stages laid out by hospice, so family can clearly see the end is drawing closer.
Those of us with loved ones dying of old age often have no diagnosis we can point to. Sure my mom had a history of heart disease and TIAs or possibly strokes, but one day she was functioning fine and a week later she wouldn't get out of bed. Nothing specific happened, the docs didn't see any evidence of a stroke, my diagnosis in the ER was "sometimes they just get tired". In Canada we do not have a national hospice program, but mom's doctor and I now agree that she is palliative, which to me means she isn't going to get better but we will keep her comfortable while we wait for the end. For me personally it also means I want as little to do with the health care system as possible, just renew our scripts and be available to help with any concerns that arise and otherwise leave us alone.
As for the stages of dying, mom has been stuck at withdrawal from life around her and loss of appetite for years now. How are we supposed to understand the end is drawing near if it doesn't look much different from last week? And some people are just plain in denial, they seem to think that other people are old at 70, 80 or 90, but they themselves or their loved ones are just going to keep on going into infinity.

I couldn't tell how you know the lady who is the patient. Is this a friend or family member? It would be so difficult to not speak up for me, especially if I was closely connected and so experienced with that program. I would likely offer some information and let it be, if I was not the one in charge. Shouldn't social workers and/or hospital staff be providing the family with all the options for resources?

When my cousin was diagnosed with dementia I began my research on Palliative care. It was suggested by the team at her regular Assisted Living. I began research and then discussed Palliative care or comfort care with her doctor. As her Healthcare POA, that's the approach we have taken. We discussed not doing cancer screenings, invasive procedures, etc. She has progressed and now has severe dementia. She has lost some weight, so I await a Hospice referral. I even asked her doctor if there was anything I should know and he said no, not yet. Do I keep waiting on the doctor?

I've never heard anything negative about Hospice until I came to this site. I take it with a grain of salt. Of course, I've read a lot of positive stories here too. Nothing is perfect, but I wonder if the concerns stem from unrealistic expectations and a skewed view of what Hospice is designed to do. It's a shame that in 2015 the benefits of Hospice are still not well known. Maybe, they need more public service announcements. I'm not sure what the answer is. It's a service that is as much for the living as those who are approaching their transition, IMO.

Veronica! It's so good to hear from you!

It's so hard to not speak up when one has a professional background. Perhaps the best thing is to tell yiur roommate to ask lots of questions about what is being proposed.

Veronica, it's so good to see you on the forum again. So many people have been giving you best wishes. I recall that you worked as a hospice RN and I appreciated you advice to me when I started Hospice volunteering some time ago.

There have been threads on this forum populated by folks who felt strongly that hospice was just legalized mercy killing. This post might even reserect some of that stuff. I think like any medical service there are people who have bad experiences with hospice or trouble with particular personell. But I also think there is lots of misinformation out there about hospice. I not sure how it gets started, maybe anecdotal experiences, religious opposition, who knows. My experience has been very good. The people I work with are wonderful and the families and patients are very grateful to have our services.