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This was a comment I left for an article about falsification of patient records in a California nursing home. It turned into a blog post :)

As a hospice nurse I had the opportunity to visit with many patients who were residents in nursing facilities in a major western city (not in CA). In "good" nursing homes I routinely found bowel movement logs that had not been filled out for days. When I expressed concern (ok, raised hell) about one patient who had no BMs charted for 5 days, which I charted in my patient notes, I returned the following day to find the records completely filled out and indicating BMs every day....and initialed with different initials. Needless to say this was also charted in my notes. I then informed the administrator that a small problem with recording BMs had now become a really big problem with falsifying medical records.
Bottom line, in my experience visiting (and assessing weekly or more often) patients in a wide variety of nursing homes from medicaid "warehouses" to very, very expensive private pay facilities:
- The patients or residents who get the best, most frequent care are the patients with visitors. Nothing is better than involved family members. Patients with family, friends or outside nurses/therapists who staff are aware will be visiting regularly are kept cleaner, turned more frequently, have meds given more accurately, and tend to be cared for earlier rather than later.
- When you visit, ask questions of the nurses! When was Mom's last BM? How is she tolerating her medications? Offer to bathe your family member - this helps overworked staff and gives you a chance to do a skin check! Look at heels, back of head, ears, tailbone, buttocks, shoulderblades - pressure sores start as reddened areas that do not turn white when pressed. If you find a spot, alert the nurse supervisor. If you find an open sore, also alert the physician. Coordinate your help with when the nurse is doing rounds for skin assessments.
- Unresolved constipation becomes a fecal impaction which can become a bowel obstruction, which is often fatal in elders. Ensuring regular bowel movements in those who are debilitated is really vital. Ask each visit to see the BM log for your family member. Ensure that there is a protocol for laxatives to be given after more than 2 days maximum without a BM. Since muscle tone is often decreased, ask the doctor if a stimulant/softener combination is a good choice. Impaction/obstruction by stool is completely preventable (barring tumors,constrictions, etc), and any hospitalization for this is a big red flag to find a different facility.
- When choosing a nursing home, certainly do your homework and research. Ask some home health or hospice nurses which ones they especially like (grin) - I have seen some awesome care given in facilities that were not the top end most expensive facilities. After all that, do the nose test. Visit the facility unannounced on a weekend, and a weekday evening. Walk down the halls - what do you smell? If you smell several unchanged adult diapers - look elsewhere. This is not to say walk into rooms, but look around and use your nose. Weekends, especially weekend evenings/nights, are when staffing is probably lowest and will be the least desirable shifts.
- Be realistic! If your dad had frequent falls at home, he is not going to fall less in the nursing home. The purpose of being in a care facility is to ensure that he is as safe as possible, and that he will be found promptly when he does fall. Bedrails are not fall prevention - the opposite in fact. Bedrails are proven to increase the severity of injuries/deaths from falls. Patients get arms or legs through bedrails while climbing over, they climb over and the bedrail acts as a fulcrum - causing them to land headfirst rather than sliding to the floor. Low beds are your best defense - think mattress on the floor or the special beds (some made from PVC) that are low to the floor with mats next to them. This is the BEST injury prevention.
- Communication is vital, and making staff a part of "mom's team" is the very best way to ensure that your family member is getting great care while you are not there. Being pleasant, persistent, and grateful goes a long way. Most nursing homes are staffed with very caring and incredibly overworked people. Negligence is not malicious, it is simply a matter of not having enough time or staffing to do everything needed and required.

Chronic pain and treatments

In response to a recent ranty tweet - I am doing a blog post. This is LONG, I am a nurse and I go on and on. But this has some good info and citations so hopefully some will find it helpful.
My qualifications to speak about pain: I am a certified Hospice and Palliative Care Nurse (CHPN). I am specially trained in pain and symptom control, among many other things.
In the last few years I have worked in both Home Health Nursing and in Family Care. These experiences have given me some broader perspectives, as well as explaining a lot of things I was seeing in end of life care that I could not understand. In short, a big majority of family medicine practitioners, as well as other specialists, are very bad at treating pain.
DISCLAIMER: I have a definite point of view here. Citations will be provided, but much of this is based on my experience as well. My specialty is allopathic palliative medicine. If you believe in other forms of medicine I suggest discussing questions with those specialists. Some have found relief from alternative medicine and some haven't, sometimes a combination of the two can work. But COMMUNICATE with all your providers on everything you are doing. Herbals are not "harmless" and can interact with prescription medications. My personal opinion is to avoid any provider who tells you to stop all conventional treatments, this is almost always harmful and indicates a frightening lack of concern for your welfare.
I understand very well the problems of drug diversion in this country, and I understand the rash of individuals who ARE seeking drugs for problems other than pain.
I feel that the expectation of a pain-free life is unrealistic. To quote William Goldman's Princess Bride: "Life is pain, Highness. Anyone who says differently is selling something".
I also believe that we have an equally serious epidemic of pseudo-addiction in this country. Pseudo-addiction is the behaviors exhibited by people who have chronic under-treated pain. Doctor-hopping, frequent Emergency Department visits, frequent dental visits, high utilization of medical resources, even seeking unnecessary or optional surgery. These behaviors are driven by the need for some relief, even temporary, from suffering.

Relief of suffering is what brought so many of us into medicine in the first place - why is it that so many medical professionals are not better at it? Maybe they don't spend enough time on this stuff in medical school. Too many times I have witnessed MDs who were more concerned about a perceived threat (non-existent in most cases) to their license than in the suffering of another human being. The other problem is physicians tend to hate soft, fuzzy things like "anecdotal evidence" and "patient reported symptoms". They would prefer it if you could pee in a cup or have a "pain panel" drawn to measure your pain. Objective evidence rather than subjective. Does this mean s/he thinks you are a liar? Not really, but your 2/10 pain is someone else's "11!" which makes dosing and treating very difficult.

So, most of us are aware of the problem - how about some solutions?
Despite my assertion that your doctor may not be well educated in adjunctive medications, he DOES know a lot more about all the different medical issues and your body that create the snowflake that is you! So this AIN'T DIAGNOSING OR PRESCRIBING - just to be clear. This is like one of those annoying prescription drug ads that ends "ask your doctor if Product X is right for you". This is intended as a conversation starter between yourself and your provider.

We classify pain into different types, based on the source of the pain and the character of the pain. Lots of pain is mixed - muscle spasm pinching nerves, for instance. When you report pain, there are some great pain assessment tools out there that can help your provider determine the type of pain you are having, which should direct your treatment.
In addition to determining whether your pain is somatic, nerve, bone, etc. these guides also should address things like depression, fear, as well as your understanding of what the pain means. These are important. If your pain is from muscle spasms, for instance, then anxiety that this severe pain means that something horrible (like cancer) is wrong with you, this increases muscle tension and sleeplessness, and you get worsening symptoms and more anxiety in a vicious circle. Just giving a muscle relaxer and some pain meds is not going to address the underlying fear, but some discussion would go a long way in helping more than stronger meds.
Depression is a HUGE issue for folks with chronic pain. Hurting is depressing, and depression magnifies pain. Another vicious circle. Too many physicians will say "oh, you are just depressed" and offer an SSRI (selective seratonin reuptake inhibitor - an antidepressant) rather than addressing underlying pain. Alternately, treating pain without addressing underlying depression is unproductive as well. A multidisciplinary pain team is going to be your provider's best resource, and really good for you as well. Ask if one is available. Too often this is interpreted as some sort of "punishment" or "brushoff", but this should be an adjunct to treating your pain - not a substitute for treatment. A combination of physical and emotional therapy, massage or acupuncture, diet, and medications have shown great success in helping folks with chronic pain have relief and better quality of life. Even in rural Canada! http://www.ncbi.nlm.nih.gov/pubmed/20070924
Pain is complicated, but the first step is just knowing what is causing it, to determine treatment and to assuage your own fears about why you are in pain.
Cancer pain - which is my specialty. Ironically, if you are having pain from cancer there is a plethora of resources available for yourself and your provider. I have met few providers who would not bend over backwards to help keep their cancer patients pain free. Talk to your oncologist, and request a palliative pain consult - they can look at your specific issues and design a regimen that is specific to you.
For those who are looking at long term pain issues, there are some adjunctive medications that work well for specific types of pain - and either work BETTER than narcotics or as adjuncts to them (hence the name) in treating your pain. These are all intended to address your pain, not the underlying CAUSE of the pain, which is obviously the ideal solution.

Nerve Pain: This type of pain is generally described as tingling, burning, "electric" or shooting type pain. It can be accompanied by numbness in some areas as well. Examples would be diabetic neuropathy and sciatic pain. This type of pain does not typically respond well to narcotics, but does often respond to tricyclic antidepressants: http://www.webmd.com/pain-management/tricyclic-antidepressants-for-chronic-pain or anti-seizure medications: http://www.mayoclinic.com/health/pain-medications/PN00045

Bone Pain: Bone pain is deep, dull, aching pain and is seen in fractures (including osteoporosis), osteoarthritis, as well as bone cancer. This is a pain that responds very well to antiinflammatories, either in conjunction with or instead of narcotics. It tends to respond less well to acetaminophen (tylenol). This means that the vicodin or percocet that is often prescribed may not be the best answer, as tylenol is not an antiinflammatory. Much better is either something like ibuprofen, either alone or in combination with a narcotic to control moderate bone pain. Severe bone pain, such as in bone cancer, usually responds well to steroids and radiation. http://health.howstuffworks.com/diseases-conditions/cancer/pain/cancer-and-bone-pain.htm

Pre-/Menstrual Pain: I have included this because many women wind up in their providers office for severe cramping and pain every month. Interestingly, like bone pain, prostaglandins are to blame for the horrible menstrual cramps many women experience. And like bone pain, this actually responds very well to antiinflammtories rather than acetaminophen/narcotic combinations. This is an epiphany I had in pharmacology class in nursing school while studying NSAIDs, and suffering my entire reproductive life with debilitating cramps every month. DO discuss dosing with your provider - NSAIDs like ibuprofen have maximum doses and exceeding those will lead to liver and kidney damage.

General somatic (body) pain: This can be muscle pain, headache, joint pain, etc. Mild to moderate pain of this type is pretty normal for most folks, especially of a "certain" age. This pain can respond to acetaminophen, NSAIDs, or narcotics depending on the cause. Low back pain is very, very common and is typically muscular in origin. Lots of nurses wind up with back pain from repetitive strains over the years. Your best solution is to come up with a program with your provider that includes a multidisciplinary pain team. Strengthening exercises, massage, heat or ice, electrical stimulation, acupuncture, all can help to control your pain and minimize the amount of medications you take.

Obviously, I am addressing chronic vs acute pain here. If you have surgery or a broken leg, most providers and hospitals are pretty good about keeping you comfortable for the first few weeks afterwards. Past that is when things tend to get sticky. Chronic pain looks different than acute pain. Objective measures we use to help determine pain levels (respiration, blood pressure, grimacing) do not work well for chronic pain sufferers. Providers need to realize this.

Questions for your doctor:

1. Based on my history and the thorough pain assessment I provided (because you SHOULD be given one), what do you feel is the cause of my pain?

2. Is there a treatment available to treat the cause of my pain (hip replacement, etc)?

3. Do you anticipate my pain getting better over time? Why or why not?

4. What are the best treatments for my type of pain? Are they damaging over long term?

5. Do you have a multidisciplinary team who can help me to address my chronic pain issues in a holistic way? If not, can you recommend someplace that does?

6. What other non-pharmaceutical things can I do to help my pain and keep my medication dosages down? What about things like spinal blocks or botox injections?

7. What are the side effects of my medication (with any narcotics the answer ALWAYS includes constipation)? How should I deal with those side effects? Are there any dietary restrictions with this medication?

8. What are YOUR concerns about my pain, and about treating my pain?

9. When will we do a followup? Will that include a functional assessment of my current treatment plan?

10. What are your goals for my treatment? Here are my goals for my treatment - do they match? If not, can we address our expectations?

Yes, this is long. But it is a lot shorter than years of increasingly frustrating visits to your provider for both of you. And you do NOT want to end up being labelled "drug seeker". That follows you and can affect all your future healthcare as well.

*Notes: Acetaminophen (Tylenol) has a maximum daily dosage of 4000mg for health adults. That is with NO alcohol ingestion. Over that dosage liver damage begins. MANY over the counter drugs and prescription drugs contain acetaminophen (it is good at making drugs work better, hence the combinations with narcotics). Your liver will process alcohol before it clears medications, and so they can build up - and acetaminophen is especially toxic. Be aware for yourself and your family, this should be written with fire in the sky. 4000mg is 8 extra strength tylenol in 24 hours. Do not OD on tylenol trying to treat your own pain, liver failure is fatal and painful.

Little White Coffins

I find myself quite incensed in the wake of last summer's pertussis outbreak in California, followed by the debunking (and loss of medical license to practice) of Andrew Wakefield, to continue to see celebrity parents encouraging parents to refuse vaccination for their children.
That inspired this post - which will doubtless upset some people. Do not read or Cope.
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An observation regarding Sarah Palin

As an Alaskan, I feel no small amount of embarassment that the capable and smart women of my state are being represented by such a loud and ignorant voice.
Sarah became Governor of the State of Alaska, a job she was completely unqualified for, because Alaskans were sick of the former governor and would have elected a monkey had one run against him. In retrospect, perhaps.....well, water under the bridge now. Sarah ran as the Outsider, not in the Old Boy network, and promised to bring the gas pipeline (which had been mouldering in Juneau) to fruition.
Alaska is a state small in population, and we are rabidly independent and stubborn folk. We will give about anyone a chance, provided they don't start telling us "how it is done in the south 48". At first Sarah did fine, some of her cronies in the Republican party got popped for taking bribes (some embarrassingly small) but she was pretty clean all told. She didn't screw much up, but didn't do much either. Sarah finally announced she was pregnant again. She continued to learn the job of Governor, and a small movement pushing to get her on the VP ticket in her party started to gain momentum. I do not belong to said party and paid little attention. She was vastly unqualified and it appeared to be just some overzealous fanboys behind it.
Then it was announced that Sarah had given birth. They let us know that Trig had Downs and that Sarah and her family had been aware of this before his birth. This was not a big deal....except.
It had been mentioned in the newspaper that Sarah had not been in Anchorage when she went into labor. She boarded a commercial flight, in labor with her FIFTH child, without telling the airline personnel that she was laboring. When nurses heard about this there was outrage. This was a woman in labor with a very high risk pregnancy who endangered herself, her unborn son, and an entire planeload of passengers because she "wanted to have the baby in Anchorage".
So when Sarah trots out her family values, and makes a fuss about depictions of disabled children, and uses that child as a political tool - well, I vomit just a little bit in my mouth.
/end rant


This may or may not be the place for this, but it is the best place I've got for it right now. Warning to the cynical and sardonic - this will doubtless seem trite. But here goes.
It is dark outside now, in a lot of ways. I have many friends now who are affected by the current depression (you call it whatever you want) and are out of work right now. My mother's leukemia/lymphoma has progressed to a point of needing chemotherapy and she is looking at a limited future. Another friend is trying to keep a terminal pet comfortable and just had her sole means of transportation stolen. Another friend has been married to a man with Aspergers for years, living far from her home abroad. She had just decided to leave him and return home when he was diagnosed with pancreatic cancer - she is going to stay with him as long as he lives. My sister in law is in the ICU on a ventilator after complications of a spinal surgery, my brother at her bedside. Their twins are taking their college midterms and don't know what is happening yet.
SO? Life sucks, we know that. Move on. Life is unfair, I know that better than many.
What is it that is bothering me? What am I afraid of? What is my fear?
My fear is that people will lose hope. That they will stop trusting that they are loved. And I do not mean that in a "Jesus loves all the children" way. I mean that in a personal way. I want everyone to know that I love them. I personally love and care about their wellbeing. I wish I could fix it all, had money and power and magical ability to fix all of it. But I am just me, one of a whole lot of mes out there. The one thing I can do, that is in my power, is to love.
So I am going to sit here and love you all just as hard as I can. Because I can. And I hope you all will join me.

So much to be thankful for this year!

I have a wonderful new husband, both my parents are still with me this year. Clarence and I both have jobs, our animals are all well. I have an amazing new family, and so many new friends and acquaintances. Our house is full of love and laugher (some barking too).
And I am profoundly grateful.
Happy Holidays

Happy New Year

A Happy and Healthy New Year to all my friends out there!
The times are certain to be interesting....

You are all so wonderful!

I spoke with my mom and she says "go ahead" and plan for late August - early September in Bellingham for the wedding. She might have to start chemo at some point before then, but life is uncertain and we are going to go ahead - will deal with any unexpected things that crop up as they arise.
We are very fortunate in that we both have wonderful families who are so excited that we have found each other that they would probably agree to anything at this point :)
I am so very grateful for the offers of help, as I am completely unfamiliar with Bellingham - and we are still deciding what sort of a ceremony we want. The most important elements are all of you - our friends and families, and the two of us - everything else is embellishment.

Planning a wedding

Oh my......