Patient Rights and Responsibilities

As a cancer patient, you will most likely learn a great deal more than you ever thought about knowing regarding doctors, your health, your responsibilities as a patient, and how to get the most from your relationship with your Oncologist, and the support staff that surrounds your treatment. And, if you do not, then you will need to get busy and put that in motion, so you can make sure you’re getting the very best care that’s available to you, because your life will depend on it!

When I first became a cancer patient I had little experience to prepare me for the level of dealing with doctors, with hospitals, insurance providers, etc., which was necessary. At that time I expected a doctor to know what he was doing, and to tell me what to do, and I didn’t question it. I was woefully ignorant.

While great strides have been made in recent years, there are still a great many things about many different types of cancer that are still not known. Thus, doctors can only go on what records have been kept, what statistics have been researched and proven (although they can be misleading, for they are only for a very specific thing), and what studies and trials have been done.

With new advances coming all the time and little time to study them all thoroughly because they are needed so badly, there are still more unknowns thrown into the equation, and what it means to the patient is that you cannot count on your doctor knowing “everything.” Another facet of that is that patients vary a great deal, and since there are a number of things that are hard to put down in black and white and use in equations, statistics, etc. (such as the mental condition of the patient, how they react to stress, what their exact physical condition is, and on and on), it is difficult to impossible to formulate the information they need in order to know how you will respond. A third facet is that tumors vary a great deal. My first tumor was exceedingly slow growing – not aggressive at all. The one that’s causing the problem now is just the opposite, very fast growing and aggressive. I asked the doctor about that, and he said that there were probably stray cancer cells that were not destroyed that formed this new tumor, and they mutate when that happens. The mutation is much different than the other tumor. Both tumors were/are in the same lung, same quadrant. As a mutated growth, this one could react much differently than the other one did.

I’m hoping that my experience in this area may save some of you from making as many mistakes as I did, will help save time in your treatment, and will give you insight much sooner than I had it, so I could go forward more rapidly.

1. So now you know that your doctors won’t have all the answers, and you can’t expect them to. The answers are not all known yet.

Another area in which I had to rethink my position was in wanting to know EVERYTHING. I told my doctors repeatedly that I wanted to know absolutely everything, because I hate being kept in the dark. I know now that although they told me a lot, they were intuitive enough to know that it would not be good for me to know everything, so although they told me a lot and let me make the decisions, there were things they withheld, and still do. These are things that it would be so difficult to handle, in my case, that it would be detrimental for me to know them at that time. I now know that it’s probably best that I not know some things, as long as not knowing doesn’t hinder me or force me to make wrong decisions.

2. Now you know that you may not know everything there is to know, but that will be because the doctor feels it is for your own good. I do not doubt that if it came to a heavy decision I had to make, or something needed to be taken care of, my doctor would not hesitate to tell me information he would otherwise withhold.

Your Health is YOUR Responsibility

I have been very blessed to have wonderful Oncologists, and I’ve had three of them now. One in Alaska, one in Central Oregon, and now one in Southern Oregon, where I go for treatment. One of the first things the first two told me was that my health was MY responsibility, and that I should make sure that nothing slipped through the cracks, that my questions got answered, and bring anything to their attention that I was concerned about. My Oncologists have always taken the time to take care of any problems I was having, of listening to concerns, and so on. What that meant was that while I had to wait sometimes two hours beyond time for my appointment with the doctor, I knew that he was providing needed help for someone else, and that if I needed extra time, he would do the same for me when I saw him. We didn’t mind waiting.

Your first decision will be to decide what, if any treatment, you want to have for your illness. Each of us has to make this all-important decision, and I would not want to influence you or anyone else in this. I would say that you should be absolutely positive that whatever way you choose is one in which you believe, with all your heart, is the way for you to recover. You will have to put every fiber of your being into this fight, and if you do not firmly believe in what you are doing, it will not succeed. This is a decision that you must not take lightly.

Taking responsibility for your health means that you listen carefully to all that they tell you when they describe what your treatment will be, and for that reason Jim has attended every appointment with me since I began this journey, and sometimes even with both of us trying to remember something correctly we were unable to. Take important notes if you have to, or record the appointments; do whatever you have to do to keep yourself aware. This is extremely important, for if they get swamped, you will remember if something does get forgotten, and can remind them. That’s happened several times with me.

3. Now you know you’ll need to make some tough decisions, but once you’ve sorted everything out from every conceivable view, the right decision for you should become clearer. It helps to get really mad at the cancer, since that makes you more determined, and more firm in the decision to fight it. You must work sometimes to bring yourself up again to that level, so it will help if you can devise a plan that will first help you realize that you need to bring yourself up out of depression or fear, and then help you to correct it, easily.

The Chemo Infusing Room
I can remember at some point I decided to see how the cancer clinic I went to in Alaska compared to others, and I did a search on the Internet. I searched long and hard before I found a description of first one, and then several others, or at least a partial description. They all seem to have things in common, but they vary quite a bit in execution of the different aspects. The cancer clinic in Fairbanks, Alaska was really superior to the two others I’ve used, but the reason for that is understandable. The clinic in Fairbanks was the dream of my Oncologist, Dr. J. Michael Carroll, and he formed a partnership with the hospital there to make it happen. He designed it, he hand-picked every staff member, he furnished and decorated it, and he even did all the shopping for the treats in “the infusing room.” The infusing room is where most people receive their chemo treatments, and I was quite shocked the first time I went into one, for there was no privacy, although there were a couple of beds down on one end with curtains to be pulled for patients that needed it. I later found out there were private rooms, also.

For all the rest of us, chemo is done from large, specially made, cushy reclining chairs that have trays attached on both sides. To help you visualize this, in Alaska they were mostly done in purple faux leather, or leather, I’m not sure which. There were a few in light green thrown in for an accent color. The room was quite long with one wall of very tall, continuous windows to give you a good view outdoors. The recliners were spread out in a three sided oval shape, and a very long nurse’s counter made up the fourth side of the oval. Behind that counter there were tall stools for the staff, a walkway and then a small office where medications were mixed, records kept, etc.

Almost every recliner had its own small TV screen, with headphones. There were bookcases and magazine racks scattered around with reading material, and there was a CD player at one end of the room with a supply of CD’s. At the opposite end from the CD player was a refreshment counter where coffee was always ready, supplies for tea handy, a microwave, sink, and upper and lower cabinets that housed crackers, sodas, juices, etc., and a refrigerator for keeping some cold. It was rare to have no homemade or bakery goods sitting there for the patients. Patients who were well enough, former patients, staff members and other volunteers furnished them on a regular basis. It helps the nausea to eat while taking chemo treatments, and Dr. Carroll kept a well-stocked supply of delicious things to tempt failing appetites. The room was tastefully decorated with glass cases of purple art glass, and soft music played in the background.

Although there were no curtains, you learn to shed whatever pride, shyness or inhibitions you have, the cancer takes care of that for you, and if you feel up to it you often get to know others who are taking treatments at the same time and schedule you are. If someone was feeling ill or wanted privacy, they could tuck into the thick purple heated blankets provided; lean against a pillow and snooze, read or watch TV. No one would bother you if you looked like you wanted privacy.

I mentioned concern about the lack of privacy when I first entered this room, but it didn’t take long to find out it is designed that way to help patients. It promotes interaction with others, and you can find out a lot of good information in an infusing room. It also allows the staff to see at a glance who needs taken care of, how they all are doing, and where a problem with the infusing equipment is located. Those machines have little beepers that are hard to track to exact locations. An infusing room has a family atmosphere, although the degree of that varies with the different clinics. Dr. Carroll is a very caring, nurturing doctor, and he made sure each member of his staff was the same. I know it is hard to believe, but they made you feel so welcome that you almost looked forward to going. They help chase away the “lost” feeling that you have when first beginning treatment.

Chemotherapy treatments have changed much since the 1980’s when my mother-in-law had cancer. Some treatments are not hard at all, due to the additional medication you now get with the chemo. This varies, because it is to counteract whatever specific side effects are found with that particular chemo, but most include a steroid (usually prednisone) to minimize allergic reactions, Compazine to alleviate nausea, as well as other in pill form to take after you are home, sometimes vitamins that the chemo robs you of, and other specific needs. In addition to the chemo you are also given fluids to flush your system and counteract the harshness of some chemos. Some I had required you to go back the next day so more fluids could be pumped in; it was such a harsh one.

All in all they have found companion medications that really help to lessen the ill effects of chemo, and you can do things at home to help with that, too. I do not regret my decision to have conventional treatment.

4. Now you know that having chemo is not necessarily as scary and terrible as you thought it might be, if that’s the choice you’ve made for treatment.

Overcoming Limitations of your Oncology Care
I have found that Oncologists are not usually very forthcoming in providing nutritional help to patients that will alleviate their side effects and improve their general health while having treatment. It’s understandable, since they are extremely busy people, and are constantly in a time crunch. And, while good nutrition can play an important part in your treatment it is not really their forté.

When you can take an active part in your recovery you feel much more useful, you feel much more productive, and it helps you with motivation to increase it further, when you see the results of it. The main areas you can take active part in is working to keep your weight the same as it is, or to increase it to whatever they want it to be, and I have information on this site to help with that. Good nutrition is also a large part of this, since there are foods that will help with side effects and foods that can make them worse, especially where the digestive system is concerned. You need to know what they are, so you can help yourself.

Support groups and message boards on the Internet often have links to good information. There has been a tremendous increase in health information on the Internet in the last few years, and it is a simple matter to search for and find almost anything you want to know about your cancer, your treatment, side effects, and message boards to exchange information with others, and so on.

5. So now you know that it’s possible for you to find out nutrition, diet and health information on your own to take a personally proactive stance against your cancer. If you choose to help yourself, it is your responsibility to find the information to do so. Caution: when you have found a course of action you want to take, such as a major diet change, any vitamins or supplements you want to take, or other changes that will affect you, you should discuss them with your doctor BEFORE doing so, in case there may be some reason it would not be good for you to do or take certain things. Do not make changes without discussing them first.

Learning About Your Rights as a Patient

Getting a Second Opinion

This section is not meant to substitute for whatever legal rights you have as a patient, and there will be those connected with every clinic, hospital, etc. that you use. This section is to let you know that you do have rights, and to help you with those rights that pertain to your care. I have had friends who have had less than the best of care as a cancer patient, and since they didn’t know any different, they did not even know they were not getting good care. I urge anyone who is diagnosed with cancer to get a second opinion, immediately. And, do not ask for, or take, your doctor’s recommendation on this, if he has one. This should be completely YOUR choice. Go to a well-known and respected facility for your opinion, even if it is expensive. This is your LIFE you are talking about.

Getting Through to Your Doctor

Having cancer is stress enough, and if you do develop problems and you should have trouble reaching your Oncologist, or his nurse, and cannot get through the bureaucracy of the office, make sure your doctor knows this. It is important. Find out what the best process is to get help when you need it, and then use it. This is your right.

It appears to me that the larger the institution you are dealing with, the more bureaucracy there is, the less time your doctor can make for you, a full complement of staff is often lacking (especially in infusing rooms), and staff members are less personal and friendly. Not all of them, but there appears to be a marked difference in my experience. Sometimes, however, the best care available is in a larger institution, so you have to just learn how to use the system to your advantage, and make the most of it you can, and make sure you are getting the best treatment out of it you can.

Working with Oncology Staff

There is nothing like keeping well informed, paying attention and talking to staff members to get information that can be of help to you, and I would encourage you to make friends with some of them to help in this respect. Most of them are very caring, nurturing people and I made some very close friends in Alaska. Most of the treatment I’ve had since I left there was in pill form instead of infusing, so I didn’t use the infusing room until this year.

When people are sticking needles in you all the time, you want someone who is good at it. You don’t go around with bruises from wrist to shoulder for long without wanting to done by someone who is excellent, in fact. And, it is possible to actually improve their technique. It won’t always work, but with the right attitude you can sometimes make a difference. If a nurse is good at it, praise them all over the place. If you get a new one, or one that has been less than good in the past, find something to complement them about, chat with them to make sure you have their full attention, joke about coming unglued or something if they are less than the best, or tell them you are rating them or having a contest – anything to get their full attention on what they’re doing. Perhaps they’re having a bad day.

6. Now you have some tips for getting better service without being a pain in the neck at the doctor’s office.

Making Your Feelings Known

I have learned the hard way that I need to speak up when I am concerned about a recommendation by the doctor. Most recently, this last summer the chemo worked very well for a time, and I was feeling great for the first time in a very long time. The doctor wanted to discontinue the chemo when it stopped having an effect. I was concerned about it and discussed it with him, and finally agreed to that, since he had valid reasons for it. At first when we stopped the chemo I came in to be checked in a month… I was fine. The next time it was lengthened to six weeks, which concerned me, but I was fine again, with no growth of the tumor. He then lengthened it to two months. By this time I was at the end of an incredibly busy summer, and had just moved and was not feeling as well, but I didn’t argue about it. At the end of two months (this was just three weeks ago) it was to find that the tumor had gained back 50% of the growth that had been reduced in the summer, it is again growing rapidly, and I started chemo again that day. I go tomorrow for a second treatment. If I had protested about the two month delay between visits, as I felt I should, and asked for one sooner, it would not have grown so much. This is such a new chemo that we have no idea if it will work again or not. I have had a couple of good signs, so we’re hoping, but won’t know until I get an X-Ray tomorrow. I will not make that mistake again.

When I have objections or concerns, I’m sometimes able to make the doctor understand, and he agrees with me; sometimes I see his side more clearly and agree with him. Jim, who is there at every visit, often has concerns too, and his are considered as seriously as mine. He is my “caregiver.” He could often have a say in what treatment I choose, but other than our discussions at home, where we both try to clarify what I think and what I want, he refrains from trying to help me make decisions unless he sees something I don’t see, and then he’ll add that to what we’re considering. He always leaves the final decision to me. What’s important is that we’re a team; none of us is fixed in our views, and we’re all interested in finding the best solutions for my health. That is as it should be.

7. Now you know that it’s your right to choose your own road to recovery, but that it’s best to work as a team, even if it’s only you and your doctor.

What and Who Is A Caregiver?

An ideal caregiver is someone who is willing to take on the responsibility of being there for you whenever needed. As I mentioned above, if they can go to appointments with you, get you to and from any chemo treatments or other treatments after which you cannot drive, someone to discuss your concerns with and help you assimilate information, someone who’s shoulder you can cry on if need be, someone you can talk to when you are depressed, and they can remain detached enough to not be pulled down also, but can lift you up and help you back on the right road…

As you can see, this is a whole lot of stuff to be responsible for, and not every caregiver can handle all that. However, a caregiver in any form is better than none at all. Fighting cancer is no small task, and doing it alone would not be nearly as easy as with someone who is always there for you. Sometimes a support group can help with some of this. There are other options that some of you might look into if you do not have a ready-made caregiver at hand. Sometimes it is shared by several relatives, so it’s not such a burden on one person. Sometimes it’s several from a group of friends, or members of a church. You may need to “think outside the box” for this, but a caregiver is sorely needed by a patient and can make a tremendous difference in your recovery.

Well, you may not be tired of reading, but I doubt it; I, however, and tired of writing, and have to get up very early tomorrow, so I think I'll end this page here, and continue on another when I get back to it. I hope you find some information that's helpful to you on this page.

Page Created December 5, 2006

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