Pain Control and Hospice Care - Home Theater Forum and Systems -

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post #1 of 4 Old 08-08-07, 12:34 AM Thread Starter
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Pain Control and Hospice Care

I've just been through a number of the threads in this area that dealt with various medical conditions. My wife has been a nurse for 3 decades and has been working in the hospice area for the past decade. My sister was also the Executive Director of a hospice for several years. As a result I have absorbed some knowledge about pain control and hospice care. In this thread I'm going to make some frank comments that I believe will be helpful to some but may appear insensitive to others. It may be especially difficult if you or a loved one are dealing with a life threatening condition.

I'll start with the easy topic - pain control. In short, get the pain control you need. If you're doctor can't or won't prescribe sufficient medicine to relieve your pain get a second opinion. If you think you or a loved one needs more pain meds you may have to ask for it because some doctors are reluctant for liability reasons or for their own personal reasons prejudices to prescribe it. There is ample evidence that using pain control medicine to relieve pain is not addictive. It is better to take medicine when the pain starts than wait until it gets really bad. It takes a lot more medicine to stop the pain after it really gets going. Studies have shown that good pain control speeds healing. I could go on about this but I think this link from the National Cancer Institute does a good job of explaining the current medical understanding of pain.

While that page refers to cancer it could just as well apply to any other pain. If you're in pain stop being a tough guy. If you're loved one is in pain encourage them to get help and be their advocate if they are not up to demanding the help they need.

I would like to point out one specific point from that article. If you need to find a good pain specialist find the biggest hospice in town and ask them who to see. My wife's hospice has a daily census of 150+. That means they are managing pain for thousands of people every year. They have doctors that attend weekly meetings to discuss various patients. My wife has about a dozen RNs that work for her. She knows more about pain management than most of the doctors she deals with on a daily basis and often advises them on what to prescribe. She obviously knows who the doctors are that are good at pain control.

For those of you who may not be familiar with hospice it is medical care for the terminally ill. Hospice care is focused on palliative care rather than curing the patient. Palliative care refers to any care that alleviates symptoms, even if there is hope of a cure by other means so palliative care is not restricted to a hospice setting. Hospice care can be provided in a hospital, nursing home or a home setting. Most if not all hospices also have social workers and chaplains for support. They provide support services for surviving family members for some time after the death of the patient.

Now the point where I may have some remarks that may be too candid for those of you that may be dealing with a life threatening illness. If you think that might be you please leave this thread.

My first advice to everyone is to discuss your views on handling a terminal illness with your closest loved ones and prepare the appropriate legal documents. I won't go into those now. After your closest loved ones understand your views communicate those views to other loved ones that may not be quite so close even if you think is not any of their business. This is especially true if you think some of those people may not agree with your views. You don't want your spouse getting pressured by those people at a time when they have other things to worry about.

If you face a potentially terminal illness discuss your views with your medical providers. This is one place where I think I may have a different perspective from many people. I think it is important when you are having this discussion to understand the viewpoint of the person you are talking with. Hospice nurses tend to be zealots about what they do. They have to be. You can't do the job if you think every death is a failure. My wife, and most nurses, will sincerely threaten to come back from the grave to haunt you if you hook them up to a machine.

On the other hand some oncologists refer patients to hospice only days before they die. I can't say for sure why that is but I suspect it is a combination of their patients wishes, their belief that they shouldn't give up because they might be able to cure someone and their belief that a positive mental attitude can aid in healing. I highly recommend that you discuss the option before you ill or so you can look at your views in a less emotional situation. Don't wait until you are depressed or feeling lousy from chemotherapy. If you have already discussed it with you doctor I think he is more likely to give you a candid assessment of your situation. I also think it is the ethical thing to do as a patient. You shouldn't make your physician guess how you might take bad news.

I'm not advocating a decision one way or another just that you discuss it, make an informed decision and make your wishes clear.

Finally, I'd like to discuss a couple of situations that my wife encounters from time to time. In the first family members sometime intervene when a patient is near death to save the patient's life. When my wife recounts these incidents to me she is, at the least, disappointed with the intervening family members. I always remind her to cut the family some slack because they have to live with their choices long after the patient is gone. I would recommend that anyone else in the same situation take the same advice. That is especially true if you are the patient or the caregiver that intervenes.

The second situation sometimes finds patients in a nearly comatose state at the end of life. They seem to hang on for an awfully long time. In those situations my wife advises the family members to tell the patient that it is OK to go. As you might guess the patient often dies soon after. I think this situation occurs when the patient thinks that the surviving loved one(s) are having a difficult time dealing with the situation.

I do hope that this gives some people food for thought that they may not get elsewhere. It seemed appropriate given some of the other postings in this section.
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post #2 of 4 Old 08-08-07, 10:49 AM
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Re: Pain Control and Hospice Care

My mother died from Alzheimers, a little over a year ago (4/17/06). My stepfather didn't want her to go into a home or the hospice center. He took care of her, most of the time. He did an incredible job!

Hospice sent a woman to the house, to look after my mom, for four hours a day, Monday through Friday, so my stepfather could have a break, to go get lunch or go to Lowe's, and such. The caregiver was very good at what she did. She had received awards, for being the best in her field. She kinda bonded with my mother, although they're not supposed to. Her and my mom had the same first name, but spelled differently. That's probably one reason they bonded......... She asked us to call her at home, any time of day or night, when my mom passed, so she could come get my mom cleaned up and ready for the funeral home to come get her. Mom died at 1:10 a.m., and the caregiver came right away, when we called her, as she requested.

People that don't already know, need to know, that hospice is there to make the patient as comfortable as possible, in their last days. They are not there to help the patient improve. If the patient starts to improve, hospice will stop helping, Period, unless the Dr. makes them stay and help, which happened at one point during my mom's illness.

One more thing:
There is ample evidence that using pain control medicine to relieve pain is not addictive.
I have to disagree with that. I have back problems, and take pain medicine 4 times a day. If I miss taking a pill during the day, I'll start going through a type of withdrawal that night. Within an hour of going to sleep, my eyes will pop wide open, and I can't sit, stand, or lie still, for more than a few seconds. My insides feel like they are twisted into a huge mess, and about to snap. My hands will start shaking. I get up and take a pain pill, and pace all around the apartment for about 45 mins., and then (once the medicine is in my system) I can lie down, and go back to sleep. There are exceptions to everything, I guess........

They gave my mom quite a bit of morphine, the last month or so, of her life. Morphine is extremely addictive, but the Dr. said it didn't matter much, with my mom being in the shape she was in. It made her comfortable, and put a bit of a smile on her face, at times.
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post #3 of 4 Old 08-08-07, 01:51 PM
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Re: Pain Control and Hospice Care

I don't know much about pain control, other than I certainly don't see anything wrong with it and it should definitely be used if needed. Hospice, on the other hand... is an awesome service. Hospice took care of my uncle during his last days with cancer. They helped his family in so many good ways... were there for them anytime they needed them and even times when they didn't. They attended the funeral and comforted my aunt for a while after his death.

We just moved our office across the street back in June. Prior to moving we shared a building with Lighthouse Hospice. We got to know the owners pretty well and learned quite a bit about hospice. They now have that entire building and have grown quite large. They do offer a much needed service and kudos to them for what they do.

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post #4 of 4 Old 08-08-07, 11:26 PM Thread Starter
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Re: Pain Control and Hospice Care

People that don't already know, need to know, that hospice is there to make the patient as comfortable as possible, in their last days. They are not there to help the patient improve. If the patient starts to improve, hospice will stop helping, Period, unless the Dr. makes them stay and help, which happened at one point during my mom's illness.
I thought I would clarify this a little bit. The general rule that qualifies someone for hospice care that that they are in declining health and expected to die within 6 months. That doesn't mean that there is a six month limit it just means that at the time of admission that is the prognosis. It also means, as JVC noted, that they could be removed from service is their condition improves or even stabilizes. In that situation they are often discharged and later readmitted when their condition starts declining again.

As you might guess funding has an impact on that decision. In the past couple of years Medicare has begun taking a closer look at who is getting care and if the hospice is following the rules. They evaluate the care given and charge back the hospice for inappropriate care. As you might guess I'm a big fan of hospice care but I think this is entirely appropriate for Medicare. The costs for hospice care has been rising rapidly in part because the number of conditions for which it is used has risen. As a result, the number of people using hospice has risen and the average length of care has risen. When hospice care first began it was largely driven by cancer patients who had a relatively short treatment period. An Alzheimer's patient today may be on service much longer and it is harder to tell if they are declining. Some hospices are more liberal about interpreting the rules than others. One Oklahoma hospice has been back-billed $2 Million. One example of how hospices can abuse the system is by improperly targeting nursing homes for referrals. They point out that the care their nurses provide reduces the burden on the nursing home. That's OK if they are appropriately admit and discharge patients. If they abuse it the taxpayer picks up the tab and it sets a standard at that nursing home that makes it hard for other more reputable hospices to compete.

You might wonder why I mention that here. First, I would like you to understand that the hospice is not being cold hearted if they decline to admit your loved one or discharge them from service. Second, given Medicare's recent actions a doctor like JVC notes may not be able to force the hospice to care for your loved one and at the very least is probably less likely to do so today than a year ago.

While funding obviously influences hospice behavior I don't want uninsured people to avoid seeking out hospice care. Many hospices have some "unfunded" patients. There is probably at least one that is a non-profit organization. I suspect there may be a hospice in larger cities that is the beneficiary of United Way. I don't think I have every heard of a hospice going after the estate of a patient for payment. That doesn't mean it doesn't happen I'm just not aware of it. And of course I know nothing specific about the state of hospice in Australia or the Netherlands.

Another distinction to be aware of about hospice. It is not a substitute for a nursing home or family care. Bedridden patients are not going to get round the clock nursing, AKA continuous care. That is sometimes provided at the very end, maybe a day or two, when a patient is "actively dying". I really have no idea what that term means or how it is determined but I think it is something that is fairly apparent. I think you can think of that as the point when a doctor might tell the family to have the more distant relatives come to town.

Also hospice care isn't just about pain control. Palliative care also involves just making a patient more comfortable. A good example is congestive heart failure. In that case medications are often prescribed that improve blood flow and reduce fluid retention. One interpretation of this is that the medication is intended to improve the patient's condition. The important distinction is that it isn't intended to cure the patient. Improved blood flow and reduced swelling helps the patient feel better so it is appropriate for hospice. Antipsychotics might be prescribed to reduce the effect of dementia even though it isn't a pain control measure.

Also pain control sometimes involves treatments that are not what you might expect. My son has serious migraines and he's been through many of the first line medicines with little effect. He is now taking an antidepressant and and antiseizure medicine. It's not all about narcotics. Sometimes antidepressants or antianxiety drugs can help when pain medicine is being reduced.

Finally, if you have any question about whether hospice care is appropriate for yourself or a loved one you should check it out. JVC and Sonnie's comments about the care their relatives got is quite common. When my wife worked in a hospital few people said much when I mentioned it. When I tell them she is a hospice nurse many have a story to tell. It is probably because the nurses involved are a special breed. The only nurses that amaze me more are those that work in the children's ward. JVC says the nurse wasn't supposed to become attached to the patient. It doesn't happen with every patient but it happens all the time. You can't do the job if you don't believe in personal care and you can't provide personal care for months on end without getting attached. I don't think hospices even try to discourage it. They just try to manage it through things like bereavement lunches where staff and families get together. That and lots of vacation time.
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