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.
http://www.cancer.gov/cancertopics/paincontrol#5
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.