Comfort

During the first three months of her stay at GVM, Mom was seen in the Emergency Room and/or admitted to the hospital five times.

The reasons for the evaluations varied. The most consistent problem, however, was an increase in frequency of episodes when she would "pass out" after standing.

This problem was not new to Mother. She began to experience this while still at home, but the episodes, now occuring while under professional care at a nursing facility, necessitated a more thorough evaluation once a pattern was established.

She was hospitalized for the third time in October following yet another episode of fainting.

When you stand, gravity causes blood to pool in your legs. This results in a decrease in blood pressure ~ simply put ~ because there is less blood circulating back to your heart to pump. Under normal circumstances, special "baroreceptors" near your heart and in your carotid arteries "sense" this decrease in blood pressure. They then work to instantaneously counteract it by triggering your heart to beat faster, pumping more blood thereby stabilizing your blood pressure. Additionally, these receptors cause your peripheral blood vessels to narrow (constrict) thereby increasing the resistance to blood flow which, in turn, further adds to an increase in pressure. Got that? (I wouldn't blame you if you didn't.)

There are many medical situations which can disrupt a person's natural ability to compensate for low blood pressure. Parkinson's disease, unfortunately, is one such cause.

Parkinson's disease does not discriminate. It has the ability to affect any muscle group ~ including the muscular lining of arterial walls. When the normal process of arterial constriction and relaxation is hampered by this disease, a positional change (from seated to standing) can result in orthostatic or positional hypotension (low blood pressure).

It is this failure to adequately counteract for low blood pressure which caused Mother to pass out when attempting to get up from the bed.

She was seen in the hospital during the October stay by a cardiologist who went on to pronounce her heart "strong," and also made some adjustments to her medications aimed at increasing her blood pressure so as to forestall future events. To date, these interventions have been largely successful.

She was also seen by not one, but two neurologists. Unfortunately for Mother, their pronouncements and prescriptions were a bit of a shock. She was declared to be suffering from "End-Stage Parkinson's," was given "no more than six months to live," and both, independently, made the same recommendation:

Hospice.

I was not prepared for this.

The word comes from the Latin, "hospitium," which, when translated, comes to mean, "guesthouse." Apparently, it was originally described as a "place of shelter for weary and sick travelers returning from religious pilgramages." The modern hospice movement originated in London during the 1960's and was promoted as a "team approach to professional care giving."

Hospice came to the United States in the mid-1970's and now boasts some 3,000 plus programs across the country which offer comprehensive care.

It is designed to give supportive care to people in the final stage of a terminal illness. The focus of hospice care is on comfort and quality of life as opposed to traditional allopathic concerns for "curing" medical illnesses. The overaching goal is to, "offer a system which enables a patient to be comfortable and pain-free so they may live each day left to them fully."

All of these programs use a "multi-disciplinary" approach which includes the services of a physician, nurse, social worker, and clergy in providing care. Additional services may also include pain management; physical and occupational therapy; medical equipment and supplies; and even bereavement counseling.

As previously stated, hospice does NOT aim for a cure of a terminal illness but merely concentrates on providing comfort for any issue which may be germane to an individual's "admitting diagnosis." Outside of Mom's diagnosis of Parkinson's disease, hospice does treat potentially curable conditions such as pneumonia and bladder infections which might very well include brief hospital stays.

I personally feel both of these neurologists acted cavalierly when perfunctorily declaring Mom had no more than six months to live back in October of 2008. To be fair, I believe they were forced to rely on the totality of their professional experiences to make these judgements; there was very little objective information available to either of them.

And, I was guilty of asking the stupid question in the first place.

The fault in my thinking was not realizing they might actually offer up a reply. Yes, I understood Mother's health had clearly been declining over the past year ~ and the process had accelerated during her brief stay at GVM. Despite this, no one had dared make such a cold declaration ~ at least to my knowledge. I also know there was a part of me which accepted the six month window as a real possiblity.

So, while I do know it was an appropriate ~ albeit unanswerable ~ question to ask, I truly wish I had kept my big mouth shut.

Those six months have come and gone, soon to be replaced ~ perhaps ~ by yet another. One might consider it a small victory over the arrogance of physicians who once pretended at "playing God" by declaring a near date-certain for her demise.

Yes, there most certainly is a selfish part of me which is happy knowing Mom beat their odds. But this is countered by an even greater understanding that the woman we love continues to suffer and no longer lives any semblance of the life she once envisioned for herself.

Hospice or no hospice, there is NO comfort in this.

Learning Curve

July, 2008

I have no interest in making a sweeping indictment of or to impugn the hard work of many members of the staff at GVM; there are numerous people who work diligently and faithfully attending to the needs of every resident including Mother. With that being stated, however, I am compelled to write about the learning process we undertook when Mom became a full-time resident.

Some examples:

Medical questions/concerns that arise are eventually reported to a charge nurse who then faxes pertinent information to a resident's attending physician. It often takes a day or more for problems to be specifically addressed.

When these medical concerns are finally submitted to the physician, an on-site visit between the resident and his physician is generally not forthcoming. The physicians tend to rely on the vigilance and reports from the nursing staff of the facility -- the majority of nurses being, LPN's. The acuity of nurses to patients is reportedly 1:4. This is a blatant misrepresentation; on any given day, Mom's nurse is often the sole individual charged with overall responsibility for residents in two to three halls.

Once an attending physician has "addressed" a particular concern -- it may very well take 24 hours for any new medication or treatment to be initiated. While I do know of the existence of "emergency kits" of medication available on each hall, the supplies are not exhaustive.

There exists no in-house pharmacy. When medication requests are submitted to the contracted outside-pharmacy, orders are very often not dispensed correctly. Cipro 250 mg. dispensed vs. 500 mg. -- as ordered. Phenergan 50 mg. dispensed vs. 25 mg. -- as ordered. Worse, as in the case of an antibiotic (Ciprofloxacin) for Mother, the med techs proceeded to give the wrong medication for three days even as their own records clearly indicated an ordered dose at odds with the dispensed dose. It was only after we inquired as to the discrepancy that corrective action was taken.

To trivialize the use of "commonly prescribed" drugs like antibiotics or anti-nausea medication is dangerous. The choice of a drug and dosing generally takes into account an individual's size and age but must also include consideration for his/her general physical or mental state. Deviation from prescribed dosing can lead to serious untoward complications.

There is also considerable grace granted for the dispensing of medications in these facilities. A drug that is scheduled to be given at 8 AM may, technically, be given, "anytime from 7 AM to 9 AM." Drugs prescribed for Parkinson's disease are time-sensitive; there isn't much wiggle room for deviation from strict dosing schedules -- at least in Mother's case. While this particular issue was quickly and satisfactorily resolved -- I was hard-pressed to believe when told, "very few residents have rigid dosing requirements."

"All available staff report to the dining room," is a general announcement prior to meal services. Regardless of promises made to the contrary -- not to mention state guidelines -- there is often no staff available during these three hours of the day to assist residents who -- by way of choice or physical limitations -- do not take meals with the rest of the community.

I learned this the hard way one Sunday in July.

Mother had made the decision to take lunch in her room; she and I were happy for an opportunity to enjoy a meal together without the added distraction of the collective noise in the dining room. That was our plan.

Shortly after beginning her meal, however, the Heimlich maneuver became more than a mere abstraction for me.

I don't have it within me to describe -- adequately -- the terrifying seconds sitting immobile, staring at my mother -- as she stopped moving air, as her lips turned a ghostly blue, as her pupils dilated, and as she began to struggle violently to regain control. I was in total disbelief during those initial seconds; "Is this really happening?"

Throughout many years of training and practice I have been directly involved with resuscitating countless trauma patients in untold, varied life-threatening conditions. Working in such an environment leaves a mark on everyone.

For me, those experiences pale when judged alongside these frantic minutes at the nursing home when Mom was fighting for her life. Every aspect of the experience -- when responsibility for her survival landed squarely in my hands -- is seared into my psyche. The few minutes or so of unbridled terror are worthy of a lifetime of nightmares.

The Heimlich maneuver worked -- but I had never before been called upon to personally test its effectiveness. I distinctly remember seeing the offending small of piece of chicken that conspired to kill Mother -- looking at the innocuous, dislodged bit of protein realizing the power it had temporarily wielded.

It wasn't until later when Mom was safely back in bed recovering that the totality of the situation began to set in. I remembered I had been thinking to myself during the ordeal that, "Mom is dying and her death will be forever on my head;" her physician son, who had never before performed this maneuver, couldn't save her.

Absent the presence of a family member that afternoon, she would have surely died. Every member of the hall staff was gone. They had been summoned to the dining room to attend to the meal service.

I am a physician who practices in a very traditional hospital setting. If I didn't understand it before, the lesson had been learned: nursing homes are most definitely not hospitals. In the weeks and months ahead there was a great deal more learning to do. We could not afford to engage in a slow, steady process; our learning curve was accelerated.

Mom has most certainly never been alone since.