So it’s the 4th day of antibiotics and I still have pain in my kidney.  This means that I probably have a kidney stone (this is part of my genetic disorder – I’ve had hundreds of those too.)

Kidney stones require trips to the ER or at the very least an urgent care center that is located close to a facility with CT scan capabilities.  The LAST time I went in for a kidney stone (and was not even admitted to a hosoital room), it cost me over $3000.00.  The deductible on my CRAPPY insurance for which I pay $266.00 a month is $3000.00.

I don’t have $3000.00 to spare right now and because I know that chances are good that I’ll be admitted for lithotrypsy, (with a price tag of about 12K), I am continuing to hide out at home hoping the stone will stop moving and then I can ignore it for a few more months. 

This could turn into a requiem for health care reform but that is not my pointing in writing this.  My point is that while we complain about the poor medical treatment received by senior citizens because of their medicare coverage, the fact is that Medicare provides pretty good coverage.

My father had 7 prescription medications that he took daily (some more than once a day).  With Medicare and Medicare Part B prescription coverage, most of these medications cost $4.00 per month. (The medication that I must take daily costs me $300.00/month). 

When my father saw the doctor, his co-pays for visits were approximately $10.00 and this $10.00 was usually reimbursed due to the fact that he also carried a Medicare Part F supplemental plan which covers the 20% that Medicare does not cover for physician visits and other outpatient services (the Medicare Plan B was included in this plan and I believe that it cost less than $50.00 per month). 

Visits to the ER, of which there were several during the last few months of his life, rarely set him back more than $50.00 per visit.  The largest expense by far was the 911 ambulance ride to the hospital – $150.00 each time.

At this particular moment, I am really wishing that I qualified for Medicare – oh well, another …..several years.

The part where Medicare fails the elder patient is in its long-term care coverage.  It covers a limited amount of nursing home/skilled nursing care facility days AND the elder patient MUST BE ADMITTED AS AN INPATIENT TO A HOSPITAL prior to an admission to either one of these facilities in order for Medicare to pay.  It does NOT cover assisted living facilities unless they provide certain services (skilled nursing, wound care, etc.)  Medicare does not pay for anything that would be custodial in nature or even diabetic testing in most cases. 

Medicare also is deficient when it comes to paying for home health care.  Generally services such as bathing, help with dressing, companion care, etc, must come out of pocket. 

Occupational and physical therapy visits to the home may be covered for a limited time and these visits are very worthwhile to both the elder and their caregivers.  Therapists will work with the senior on balance, proper ways to sit down and get out of a chair, will offer suggestions for safety equipment, show caregivers how best to mount grab bars in bathrooms, make suggestions for nutritional intake and can many other significant pieces of information.

As caregivers in the boomer era, there is not much we can do to change the type of coverage that our loved ones have available, but for ourselves, or for perhaps a younger aged parent, it is imperative to purchase long-term care insurance NOW while it is still affordable.  Hopefully it will better than my CRAPPY health insurance. 

Look for a family practitioner or general practice physician to be the primary care physician for your loved one. General and family practitioners are trained to treat all aspects of a person’s health and well-being even though they have not specialized in a specific field. They treat the elderly as well as newborns, children and adults for everything from a splinter to a more serious illness.

Health Insurance Coverage

Choosing a doctor can be based upon several factors. One of the first aspects to look at is whether or not the patient’s health coverage is accepted by the physician being considered.  Most physicians will accept Medicare but it’s important to determine whether or not they will accept Medicaid and/or the supplemental policy if one is available.  If the doctor will accept the health coverage, the next thing to look at is accessibility.

Location and Accessibility

It is important to choose a doctor whose office is located close enough to be easily accessed for routine care and emergencies. If the elderly loved one is homebound, a physician who understands this and is willing to work around this detail to provide care is ideal.

Physicians can order home health nurses to draw blood, administer injections, take vitals signs and other basic medical procedures then report to the doctor. These procedures would normally be done at the doctor’s office, but when dealing with a homebound patient, getting them into the office may be a problem.

In addition, when transporting an elderly homebound loved one, distance to the doctor’s office can play a part in the convenience of the location. Determine if the time spent driving and the distance to and from a doctor’s office makes the doctor in question an acceptable choice for your loved one’s needs. If the doctor requires that your loved one must been seen at the office frequently, then distance can be an important factor when choosing the physician.

Office Hours

When choosing a doctor there are a few important questions about the doctor’s schedule that you should ask. What kind of office hours does the doctor hold? Do they have evening or weekend hours? How can you get in touch with them when the office is closed? Are the physicians who cover the “on-call” hours acceptible to you?

Hospital Choices

Most doctors have privileges at specific hospitals. When choosing a doctor, it is important to find out which hospital or hospitals the doctor has privileges at. This is the same hospital the patient would go to for emergency care, tests and surgeries in most cases. The size, location and reputation of the hospital may play a large role in your decision to choose or not choose a specific doctor.  Some towns and cities have specialty hospitals for certain conditions.  If your loved one has a condition that is treated by one of these specialty hospitals, it is important to determine if the primary physician has priviledges there.

Personality

Even the most qualified and credentialed doctor may not be the best choice for your loved one’s personal physician if their personality clashes with yours. You’ll probably want to choose a doctor that you genuinely like and feel comfortable with. Remember that you will need to be working closely with this person to advocate for the best health care for your loved one.  Imagine my surprise when I asked my father’s physician if he might be discharged in the afternoon only to hear him say “What part of HE WILL BE DISCHARGED TOMORROW MORNING did you not understand?”  However, there are also surgeons that I have worked with in the past who had terrible bed-side manners yet they are the ones with whom I would have trusted my life.

Choose a doctor who will take the time to speak with you as you advocate for your loved one’s health care. The doctor should be willing to listen to your concerns and answer your questions to your satisfaction. Remember, you are hiring them and paying them for their time.  The days of the primadonna physician OUGHT to be over.

Another consideration is the physician’s staff.

Do you like the physician’s staff? Are the doctor’s employees personable, respectful and pleasant? If you find receptionists, nurses and other staff members to be rude, then perhaps you should consider other physicians. These are the people you will be working with to schedule appointments, update prescriptions and access patient information. If you find them difficult to work with initially, it might improve over time but don’t expect it to automatically occur.

Ask the doctor if they have a Family Nurse Practitioner or a Physician’s Assistant in practice with them. These medical professionals assist doctors in caring for patients in many private practices. Decide if this is acceptable to you for your loved one’s care. If not, then you may need to continue looking or specify in the patient records that care must be provided by the doctor.  Keep in mind though that Nurse Practitioners and Physician’s Assistants generally have more time to spend with the patient and are trained to be patient advocates.  They are also often more accessible.

Making the Choice

After taking all of these factors into consideration, decide which physician you would like to care for your loved one. Schedule a new patient appointment and commit to making the new relationship work.

Ironically, later in the day, I was reading a story about MSNBC anchorwoman, Mika Brzezinski and her forthcoming book “All Things at Once” where she describes the day she fell down a flight of stairs while holding her 4 month old daughter.  She had been up all night working at the newsroom and because she couldn’t sleep (during daylight hours), had let her caregiver go home early.  She stated that she had picked up the baby and was talking 100 words per hour and walked right off the top of the stairs, landing with her on top of the baby!  The “baby” is now almost a teen and is fine, but can you imagine the horror, the pain, and the guilt that went along with that experience ? 

In the interview, she went on to say that at that point she learned to ask for help.  “If you’ve got a career that you need to nurture, there are going to be times when you need to transfer your authority to others. I will forever regret that I didn’t get help sooner so I could get through that rough patch in my career. ”

I’m sharing this story not just to talk about career vs. caregiving but to say that we must not wait until something awful happens before we ask for help.  Many of have careers and even if we don’t, we may have children and a husband who need our time and attention, as well.  We must not get to the point where we are too keyed-up to even sleep.  We must not let our families go on with their lives without us. We cannot afford to be the one who is admitted to the hospital with heart problems, anxiety disorder or something even worse while our care-recipient is left behind.  When we want to say No to something, we must say No !

If you are participating in a committee that is becoming burdensome, doing work such as cleaning or running errands that could be “resourced out” to another capable person, working with the local women’s group with whom you have nothing in common, not asking your family members (I’m talking siblings here) for help (even little bits of help), please reconsider your actions.  

Don’t wait for a 911 moment.  Just say No. 

With that in mind, we must be proactive in trying to reduce the odds of delirium occurring when our aging parent or loved-one becomes a hospital patient.

By taking the following ten steps, you may be able to reduce the risk of delirium:

1. Bring  a complete list of all medications (and their dosages), as well as a list of all over-the-counter medicines to the hospital with the patient.  It may help to bring the medication bottles as well.
2. Prepare a “medical information sheet” listing all allergies, names and phone numbers of physicians, the name of the patient’s usual pharmacy and all known medical conditions. If you have any reports such as CT scan results, recent lab tests or notes from a recent doctor visit, bring those too.
3. Bring glasses, hearing aids (and extra batteries), and dentures to the hospital. Older persons do better if they can see, hear and eat.
4. Bring in a few familiar objects from home. Things such as family photos or favorite photos in an album, a pillow, a favorite comforter or blanket for the bed, rosary beads, a beloved book and relaxation tapes can be quite comforting.
5. Help orient the patient throughout the day. Speak in a calm, reassuring tone of voice and tell the patient where he is and why he is there.
6. When giving instructions, state one fact or simple task at a time. Do not overwhelm or over stimulate the patient.
7. Massage can be soothing for some patients, but remember that for others, it can be over-stimulating. 
8. Stay with the hospitalized patient as much as possible. During an acute episode of delirium, relatives or perhaps friends should try to arrange shifts so someone can be present around the clock.  If family is not close, and it is affordable, ask about having a “sitter” present. 
9. If you detect new signs that could indicate delirium — confusion, memory problems, personality changes — it is important to discuss these with the nurses or physicians as soon as you can. Family members are often the first to notice subtle changes.
10. Find out more about delirium. The American Psychiatric Association’s “Patient and Family Guide to Understanding and Identifying Delirium” is available on line.

Adapted from The Hospital Elder Life Program 2007

The Hospital Elder Life Program (HELP) is “a program for hospitals, designed to prevent delirium by keeping hospitalized older people oriented to their surroundings, meeting their needs for nutrition, fluids and sleep and keeping them mobile within the limitations of their physical condition.”  And they are doing it with volunteers !

Delirium is a sudden disturbance in perception,  attention or cognition and can produce an altered form of semi-consciousness.  Delirium can result in increased morbidity and mortality (death and complications), prolonged hospital stays, increased hospital liability because of patient actions and complications, increased possibility of needing long term care which in turn, increases health care costs. 

In my own father’s case, he developed delirium on about his 2nd day of hospitalization and was never able to return home.  He was transferred to a skilled nursing facility where he died 4 days later.  Would he have had a different outcome if the HELP program were in place at the hospital where he was admitted?  Perhaps.

The program uses volunteers with extensive training to provide personal, supportive attention to vulnerable hospitalized elders by offering daily orientation to person, place and time, early mobilization, feeding and drinking assistance, therapeutic activities, hearing and vision adaptations and a non-pharmalogical sleep protocal.

Of course, the program also includes professional personnel.  Its members include an Elder Life Nurse Specialist who is Master Prepared with experience in geriatrics, an Elder Life Specialist who has a bachelors degree in a healthcare related field, a Geriatrician ( MD) to provide clinical consultation, a Program Director (who can be either the Elder Life Nurse Specialist or the Geriatrician), and an interdisciplinary support staff ( chaplain, pharmacist, dietician, rehab therapists, discharge planner, social worker and psych liason nurse).

This might seem expensive, but the program has been proven cost-effective in multiple studies published by highly respected medical journals such as The New England Journal of Medicine.

Ellie is one of the volunteers participating in this program in a hospital in Ontario, Canada.  She told me that as part of her training to be a volunteer in the program, she attended workshops given by The Alzheimer’s Society, The Hearing Institute, the dieticians (who discussed textures of food, colors of food on plates, etc.) and The Heart and Stroke Foundations.

“We go in each day and visit the patients to assess their condition as it applys to the program.  We can talk, walk, visit, play cards, make sure call bells are within easy reach,  and make sure that glasses, hearing aids or amplifyers are being worn.  We aid in menu choices in accordance to their dietary needs, forward any social concerns , check to be sure their sleep has been comfortable and uninterrupted as (lack of) sleep is detrimental to good health and generally make sure that they do not perceive the hospital stay as the end of the road, (as this would make) them less able to cope upon release.  We chart each time we visit a patient so that the R.N. and the social worker that head up the program can then document the information.”

Unfortunately, Ellie says that often they are not well received by the nursing staff.  I must say that as a registered nurse myself, I understand this mentality and it’s something that must change.  Nurses (AND their support staff)  tend to want to control the environment and having what they perceive as a lay person performing what used to be nursing duties can muddy the waters, so to speak.  But with health care costs rising and nurse’s ability to offer nursing care being stretched to the limit, we must realize that this program  is an awesome gift to both the patient and the health care team.

I would love to see a trial of this program in every major hospital in North America.

For more extensive information on this program, please visit http://elderlife.med.yale.edu/public/public-main.php

I also wanted to introduce you to the QAS website because they have some great teaching articles about vitamin K (a vitamin that should be limited when receiving Coumadin therapy) and also about some other medications that should be avoided during therapy.  He will discuss those more in later posts.

So without further adieu……

There is good news for patients taking Coumadin^® (warfarin)!

The good news for patients, family members and those who care for a loved-one taking Coumadin® (warfarin) came March 19, 2008 when Medicare announced coverage for patients to test their blood in the privacy of their home. The policy extends benefits to Medicare beneficiaries who have been taking warfarin for at least 90 days for any of the following reasons: atrial fibrillation, mechanical heart valve replacement, or venous thromboembolism (DVT/ PE).  

What is patient self-testing?

Patient self-testing allows patients taking warfarin to test their blood at home with a small finger-stick sample of blood – not too different for diabetic patients who check their blood for insulin levels.

Coumadin^® is a medication that requires a small sample of blood to measure the effect of prolonging the bleeding time designed to prevent dangerous blood clot development. Medicare and many private insurance company’s provide reimbursement for up to, but not more frequent, than weekly home testing to reduce bleeding risks.

Home INR testing however, requires a physician’s prescription for one of the FDA-approved, small, hand-held monitors and for testing supplies. The monitor and testing supplies are not available in retail pharmacies but can be obtained through specialty distributors such as Quality Assured Services, Inc. (QAS).  QAS is a Medicare and private insurance company that distributes, trains, and communicates patient’s home test results to the patient’s physicians.   

Who is a candidate for home INR testing?

Patients who are motivated, with a desire to improve their control of warfarin and reducing the risk of side effects are good candidates for home INR testing. The test is simple to perform by the patient or a caregiver.

How home INR testing works

Home INR testing enables patients to test more frequently than monthly, in the comfort of their home, resulting in better warfarin control and therefore improved safety. Home testing results may be phoned in through a secure 800# provided through the distributor of the monitor. Testing strips are shipped directly to the patient’s home at no additional charge.

Weekly testing is a testing frequency that has been proven superior in clinical studies. Testing weekly evaluates the effect of patients: diet, overall health, metabolism of Coumadin^® and interaction of other medications. Patients or care providers simply phone each home test result into their physician’s office or online service.

How to get started

Patients or caregivers can have many of their questions answered by visiting home INR testing. Specialty pharmacy providers such as QAS, Inc. provide full-service assistance including insurance, clinical and technical support at no charge to the patient.

My conflict comes from the conditions under which my father passed. 

Consider this scenario for a moment.  Imagine a man being admitted to a hospital who already has some comprehension that he is not going to live much longer and that being admitted is yet another BAD sign.  Then imagine that nurses and physicians perform tests and procedures without consideration of  the amount of pain that he is suffering.  Add to this the fact that every day for the past 78 years, this man has had 3-4 cups of coffee and usually enjoys a nice glass of wine at night but that with the hospital admission, all of that is taken away.  Imagine now that this man has dementia and does not recognize where he is or who these strange people are that keep entering and exiting his room.  

Is there any wonder why he would become agitated?  I, myself, become agitated if I don’t get my morning coffee and that’s just one part of the picture.

2 days after my father was admitted to the hospital, he lost his ability to know who I was.  On day 3, he lost his ability to communicate effectively at all.  When my father was transferred from the hospital to the skilled nursing facility, his arms were covered with bandages - still oozing blood on them “from trying to hit the nurses” I was told.  This is a man who is ALWAYS cheerful and happy just to BE. 

My father died 4 days after being admitted to the skilled nursing facility.  Each day when I arrived to see him, he was restrained into a wheelchair and propped at the nursing station (along with many other restrained wheelchair bound patients).  I was horrified ! To say I was unhappy with his treatment in BOTH places would be like saying “I kinda don’t like war”.  I know in my heart that my father said “this is crap!” and decided to check out!

The reason I am writing about this is not to complain, but to say that this scenario could have been different.  My father’s doctor could have told me things they neglected to tell me.  Doctors need to stop beating around the bush saying “well, he might live another year” and help families set things in motion so that elders can qualify for hospice care and can die at home, in peaceful surroundings, being able to drink their coffee, sip a bit of wine, sit on the patio if their energy allows or lie in their own beds for as long as they want and not be lined up in wheelchairs like a bunch of zombies!

If I am passionate about anything, I am passionate about this!!  End-of- life care has to change !  Monies from Medicare and Medicaid need to be re-directed to help pay for care that is respectful of the life of  the individual -that means more money for home care, more money for hospice, more money for equipment to keep elders safe in the first place. 

So as I continue to support caregivers of all kinds and provide the best information that I can find to help make your job easier, I am also going to encourage you to have frank discussions with your care recipient’s physicians about future care choices and to please consider home care as one of the options……….because hospitals are not good places for our elders. 

Because………..as a care giver, I must also take care of myself. As my father’s health is declining quickly, I have not been able to do much of that lately. I needed to find an escape from the worry, the daily care giving tasks and the reality that these may be the last few weeks of my father’s life.

What can you do in your own life that will offer you something to look forward to, something to take your mind off the worrying and your care giving duties. I challenge you to find something and to DO it.

I wanted to share with you the following video. (And thank you to a Twitter friend for sharing it with ME.) Although it was not my inspiration to return to ballet classes, it IS inspiring me to continue because I have to face the fact that some day in the future, I will not be a care giver any longer.

[youtube]http://www.youtube.com/watch?v=tb_VkNOGWxI[/youtube]