One of the Nation’s most admired past presidents first brought Alzheimer’s disease to the forefront.  President Ronald Reagan announced to the world in 1994 that he was diagnosed with a condition called Alzheimer’s disease.  Alzheimer’s disease is a progressive and (currently) irreversible disease of the brain.  It begins by having difficulty with short-term memory but progresses until ultimately the person loses their ability to speak, swallow or care for their own needs.  Although President Reagan gave a face to Alzheimer’s, I think there is still much confusion and misunderstanding about this disease.

“I do not have Alzheimer’s disease; I was tested last year and my doctor told me that I have dementia”.  I have lost count as to how many times I have heard this statement from my patients (and their adult children).  I hope by the end of this post that you will have a much better understanding of dementia and why this statement is both false and absurd.

Although people think that Alzheimer’s disease is different from dementia, it is in fact the most common form of dementia.  Dementia is a broad term used to describe a group of neurodegenerative diseases.  I often use Coca Cola to help my patients better understand the relationship between Dementia and Alzheimer’s disease.  Think of dementia as a broad descriptive generalized term like “soda”.  There are many different “types” of soda just as there are many different “types” of dementia.  Most people would agree that Coca Cola is probably one of the most common and recognizable types of sodas.  Alzheimer’s Disease is believed to be the most common “type” of dementia.  Scientists estimate that Alzheimer’s comprises about 60-80 percent of all dementias.

What is Dementia?

Dementia is a neurodegenerative disease.  Neurodegenerative means that certain parts of the nervous system (which is made up of our brain, spinal cord and peripheral nerves) stop functioning properly.  With dementia (or in dementing diseases), it is our memory function (or brain) that is primarily affected.    There are other neurodegenerative diseases that you have probably also heard of like Parkinson’s or Lou Gehrig’s Disease (amyotrophic lateral sclerosis-ALS).  In these other diseases, different parts of the neurologic system are affected and degenerate.

What are the different TYPES of Dementia? 

Alzheimer’s Disease: As I have already noted above, Alzheimer’s disease  is  THE MOST common type of dementia.  Currently this disease affects an estimated 47 million people worldwide.  Because a person’s AGE is THE biggest risk factor for this disease, the number of people worldwide affected by this disease is expected to increase to over 130 million by 2050.  Alzheimer’s is thought to be caused by an abnormal accumulation of proteins (beta-amyloid and tau) within the brain. These proteins initially interfere in the brain’s ability to form new memories (short term memories), and then ultimately interfere in the brain’s ability to retrieve longer-term memories and then ultimately render the brain incapable of even performing basic functions like speaking, swallowing, walking and bowel/bladder control.

Lewy Body Dementia: This form of dementia is becoming a more commonly recognized type of dementia.  Scientists estimate that this type of dementia comprises about 10-20% of all of the dementias.  It is characterized by a triad of symptoms: Memory loss, parkinsonian symptoms and hallucinations.

Vascular Dementia: This type of dementia is sometimes referred to as multi-infarct or post stroke dementia.  It is characterized by an abrupt change in memory function following a stroke.  Its progression is usually described as a “stair-step type” decline.  A person’s memory may decline significantly following a stroke and then remain stable for a period of time until there is another stroke, at which time it takes another significant decline.  This type of dementia is estimated to comprise about 10% of all dementias.

THE OTHERS: These dementias include: Frontal Lobe Dementia, Alcoholic dementia, Creutzfeld Jacob disease, Huntington’s disease and many more.

Is there a Treatment for these dementias?

There is currently no cure for any dementia.  There is also no known medication or treatment that is known to slow or reverse the disease once it is diagnosed.   There are two classes of medications that have been FDA approved for use in the treatment of symptoms in Alzheimer’s disease: Cholinesterase inhibitors and NMDA receptor antagonist.  Both of these drug classes have been approved for the treatment of symptoms associated with Alzheimer’s dementia but neither halt nor reverse the underlying disease process.

There have been many alternative medications and vitamins that have also been studied to help prevent or delay the progression of dementia.  Unfortunately, there are no “proven” treatments in this arena that are available at this time either.  Numerous studies have been performed by looking at statins,  hormone  replacement, Vitamin E and coenzyme Q 10 to name a few.  The Alzheimer’s association has a good summary  of alternative treatments.

What is the Prognosis?

Unfortunately, dementia is a progressive and fatal disease.  The rate of progression in Alzheimer’s disease seems to be slower than other dementias such as Lewy Body or Frontotemporal dementia.  The average life expectancy after diagnosis of Alzheimer’s is approximately 7-10 years.  The natural history of this disease, however, is dependent on a number of factors, which include age at the time of diagnoses, other underlying medical conditions and the state of general health when the diagnosis occurs.  I have several patients who are still in relatively good physical health who have had the disease for over 15 years.

What should I do if I am (or someone I care about) diagnosed with Dementia?

1. Acknowledge the diagnosis and expect a roller coaster of normal emotions: Fear, Despair, Denial, Depression, Hope, and Anger.

Be supportive if you are the family member of someone who’s been diagnosed.  If you are the one that has been diagnosed with dementia, try to rally support among family and trusted friends to help you through this rough time.  There are often support groups available in communities if there are no family or friends nearby.

2. Legal and Financial Planning

For most people who are diagnosed in the early stages of the disease, you are still very capable of making decisions with regards to your personal finances and legal affairs.  Because Alzheimer’s disease is progressive, there will ultimately come a time when you are no longer going to be able to speak for yourself.  Because of this fact, it is EXTREMELY important to set things up (while you are able and in the early stages of the disease) so that your wishes will be respected and honored.  This will allow you to remain in control of yourself and of your estate (even when you ultimately lose your mental capacity to do so).  It is also incredibly important to consider whom you trust and would like to be your decision maker when you lose that ability to make decisions for yourself.  This is called a DPOA (Durable Power of Attorney).  I discuss the importance of a DPOA in a previous post.  Please refer to it to gain a better understanding of the importance of what it is.

3. Safety

Many people do not understand how a disease like Alzheimer’s can affect safety.  Safety becomes a key factor that MUST be addressed in patients with Alzheimer’s disease.  First of all, making sure that persons afflicted with dementia have adequate supervision to ensure their proper nourishment, hygiene and medication management are key.  Secondly, some patient’s with Alzheimer’s disease have a tendency to wander and can get lost.  I have seen a number of patients who were found on the side of the road or near railroad tracks-dehydrated and critically ill.  A number of house fires have also been started because patients with memory loss forget to turn off the stove or accidentally light a match near an oxygen tank.

I once took care of a demented lady with 2^nd degree burns to her face that she acquired by lighting her cigarette while she was wearing her oxygen.  Her daughter had always been very careful to take her oxygen off whenever she accompanied her mother outside to smoke. She told her mother repeatedly that this needed to be done every time if she wanted to smoke.  Unfortunately, one evening, when the patient was at home by herself, she did not know (or recall) the dangers of smoking around oxygen.  Thankfully, the patient recovered uneventfully.  These dangers exist because the Alzheimer’s patient is unable to recall these safety measures (regardless of how many times they are repeatedly told).

Another safety issue that most people with dementia often avoid talking about is driving safety.  There are many states that have mandatory reporting requirements for physicians who diagnose patients with dementia. A diagnosis of dementia does not mean an automatic revocation of a driver’s license.  However, there will eventually come a time that it will become unsafe for the patient and the public for the individual to continue to drive.

There are some warning signs that can help family/friends determine when someone may no longer be safe to drive.  These are:

• Forgetting how to locate familiar places
• Failing to observe traffic signs
• Making slow or poor decisions in traffic
• Driving at an inappropriate speed
• Becoming angry or confused while driving
• Hitting curbs
• Using poor lane control
• Making errors at intersections
• Confusing the brake and gas pedals
• Returning from a routine drive later than usual
• Forgetting the destination you are driving to during the trip

In the early stages of dementia, there are programs that do exist that can help with driver rehabilitation and maintenance of driving independence for as long as feasibly possible.

Educating oneself about this disease is the best thing that you can do for yourself and/or a loved one.  As previously mentioned, there are no cures.  Because of its increasing prevalence, there is significant interest and funding going towards trying to discover a cure. There exists tremendous need for volunteers and donations to help treat current patients with this disease.  So, if you have the ability and interest, please contact your local Alzheimer’s Association or Senior Center to see how you may be able to help!

As Former President Reagan said so graciously, ” I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.”

Hospice is often a dreaded word that brings feelings of fear, sadness and despair to most people. It is, of course, only spoken about at the end of someone’s life and that, in and of itself, causes an array of negative and scary emotions for most people. However, instead of something to be feared, I think that with a better understanding of the purpose and mission of hospice, many people can come to appreciate and fully benefit from the services and care that hospice has to offer and no longer be as afraid or scared.

The truth is, hospice is a benefit that is offered at no cost to the patient and his or her family. The goals of hospice are to maintain and offer comfort and dignity to those with a life expectancy of 6 months or less. This does not mean that a patient must actually die or that they WILL die within 6 months if they accept hospice services. The “6-month or less prognosis” is a medical guestimate that physicians make for the “average life expectancy of persons with similar disease process”. We all know that each of us as individuals are unique and that no one can precisely predict one’s life expectancy. I have had my fair share of patients who have “outlived” the “6-month prediction”. In the cases where a patient’s life expectancy remains 6 months or less (even though they have exceeded the initial 6 months), then hospice services will continue to be continued. If, however, a patient’s health improves to the point where his/her life expectancy is now going to be longer than 6 months, then hospice services will be discontinued until the patient’s condition changes (if it ever changes).

Hospice should not be feared but rather better understood. Below, I have outlined 5 of the most common MISCONCEPTIONS that I have seen my patients have regarding hospice services.

MYTH 1. Hospice expedites death

I often hear from patients that they do not want hospice because “all they do is give you medications to expedite death!” This is completely untrue and actually illegal in most states as it is not legal to administer any medications with the intent to speed up the end of one’s life (there are currently 6 states where physician assisted suicide is currently legal). Hospice is meant to support and ensure that a person remains as comfortable and dignified as possible at, or near, the end of their life. Whatever symptoms a person experiences, be it pain, nausea, shortness of breath, anxiety, or any other symptom that may lead to discomfort…. these are the symptoms targeted and treated by the hospice providers. It is true, however, that if a patient is suffering from significant amounts of pain that certain pain medications that are administered can have the side effect of making someone sleepy and somnolent. Some pain relieving medications can also lead to slower breathing as well.   The goal of any hospice medications prescribed, however, is meant to alleviate suffering and are not meant to expedite one’s death.

There are some patients that are treated by the hospice team that actually DO recover significantly enough that they are discharged from hospice services. One of my most favorite patients comes to mind whenever I discuss hospice. Ms. Lilly (whom I have written about in a separate post) came to me while she was on hospice care. When I first met her, she was 74 years old and suffered from incredibly debilitating rheumatoid arthritis. Her disease caused her so much pain that she was unable to even get out of bed. This bed-bound state, in turn, led to the development of a significant bed sore. Her family moved her into a nursing home to receive hospice care at what was thought to be the “end of her life” due to her frail state. Well, to everyone’s surprise, with hospice support and the staff at the nursing home, her pain was well controlled and her wound was ultimately healed. Today, 10 years later, Ms. Lilly sits up in her wheelchair and happily greets people every morning with her contagious smile…. Completely off of hospice!! Hospice does not (and is not meant) to change the natural history of a person’s disease process. As stated earlier, it does NOT expedite one’s death.

MYTH 2. Hospice is only for cancer patients

I actually run into this misconception a lot in my own practice. Contrary to what most people think, over 65% of all hospice enrollees do NOT have cancer.   My patients who suffer from diseases such as congestive heart failure (CHF) or chronic obstructive pulmonary disease (COPD) are often surprised when I bring up hospice.

Again, hospice is a service that is available to anyone (whatever age or medical diagnosis) who has a medically determined life expectancy of 6 months or less. This includes children, people with non-cancer diagnoses such as COPD, congestive heart failure, multiple sclerosis, dementia, etc. to name just a few. Hospice also provides excellent bereavement services for family members during the patient’s enrollment period and after the patient ‘s death, as well. Hospice care utilizes an interdisciplinary team approach towards care. The hospice team includes: Physicians, nurses, nurse aides, clergy, social workers and volunteers.

MYTH 3. Hospice provides the actual caregivers or someone to help provide constant care for the enrolled patient.

It is true that most people who actually qualify for hospice services will need some level of caregiving assistance towards the end of their life. Unfortunately, caregivers are NOT part of the hospice benefit package. Many people incorrectly expect that if they sign up for hospice that hospice will actually provide the caregivers for them (or for their loved ones).

By definition, a caregiver is someone who provides supervision, assistance, meal preparation, etc. for a patient. A caregiver is NOT a nurse and the cost of such help varies from state to state but averages around $18-25/hour. This can prove to be quite costly, which is why, many times, it is a family member who steps in to take on the role of caregiver. Many patients of mine are hesitant to spend money on themselves…even at the end of their lives. Family members also feel guilty if they are not the ones providing care for their dying spouse or parent. In my opinion, any money that can be spent on caregivers is well worth it. By spending the money to hire outside help, the spousal relationship or parent-child relationship will often be better preserved and remain in a healthier state. Family members are able to maintain their own health and offer better emotional support to the patient in the role of a spouse/child rather than as a caregiver.

MYTH 4. Hospice is a PLACE where you go to die

Many people assume that hospice is merely a place to go and die. Inpatient hospice facilities do exist, however, “hospice” is not a physical building or place. Hospice is a team of people who offer care and support. Physicians lead the interdisciplinary team to ensure any symptoms the patient experiences are adequately controlled. Nurses on the hospice team visit regularly to assess any symptoms a patient may be suffering from. Nurses are able to treat wounds, help with tube feeding, administer intravenous or subcutaneous medications or fluid, manage foley catheters, etc. Most of the care that patients receive, however, is in their own home.

There are only very limited circumstances in which a patient would be moved to an inpatient hospice facility. To help better understand when this might be the case, one must know that there are FOUR different levels of hospice care available. Only patients who are considered to be “inpatient level of medical care” are moved to an actual hospice facility (or hospice contracted facility). According to the National Health and Palliative Care Organization (NHPCO), in 2013, less than 5% of patient care days were delivered in a facility at the “inpatient level of care.”

The four (4) levels of hospice care as defined by Medicare are:

A.  Routine Home Care:

This is THE most common level of hospice services in the United States. Greater than 95% of all hospice patients are admitted at this routine level. Core services are provided by the hospice interdisciplinary team in the patient’s home. The patient’s home may be a private home, an assisted living facility, a boarding home, or a long-term care facility – it is wherever the patient happens to live.

B.  Respite Care

Inpatient Respite Care is available only to provide temporary relief to the patient’s actual primary caregiver. Respite care can be provided in a hospital, hospice facility, or a long term care facility that has sufficient 24 hour nursing personnel present on all shifts to guarantee that patient’s needs are met. Respite care is provided for a maximum of 5 consecutive days per benefit period. Often times caregivers schedule respite in order to travel, rest or to take care of their own healthcare needs.

When a patient is in respite care, it is the hospice’s financial responsibility to pay room and board to the facility where the patient is placed. The hospice agency may provide respite in a variety of contracted settings (i.e. local nursing homes, assisted living facilities, etc.)

C.  Continuous Care

Continuous Care is intended to support the patient and their caregiver(s) through brief periods of crisis (e.g., if a patient becomes delirious at the end of life and the doctor is trying to titrate treatment to resolve this symptom). Care can be provided for a minimum of 8 hours and up to 24 to achieve management of acute medical symptoms. This period may last until the crisis is resolved, but the general timeframe set by Medicare is 3-5 days. The care must be predominantly skilled nursing care. Continuous home care may be provided in the patient’s home wherever the patient is living. The care provided is meant to help manage the crisis in the patient’s current care setting.

D.  Inpatient Hospice

The Medicare Hospice Benefit provides for care to be delivered outside of the patient’s residence or home where intensive nursing and other support is required only in certain instances.

Criteria for this level of care include:

• Uncontrolled distressing physical symptoms (e.g. uncontrolled pain, intractable nausea, respiratory distress, severe wounds, etc.).
• Psychosocial problems (e.g. unsafe home environment).

Inpatient hospice care can be provided in a variety of settings including dedicated inpatient hospice facilities or contracted beds within hospitals/nursing homes. The key factor as stated by Medicare is…”ONLY IF CARE REQUIRED BY THE PATIENT CANNOT BE MANAGED WHERE THE PATIENT RESIDES, MAY THE PATIENT BE INPATIENT”

Imminent death alone does not qualify a patient for inpatient hospice care.

MYTH 5. Everyone should have hospice at the end of his/her life

There is the right time, person and place for hospice. Not all patients that I see would benefit from hospice. There are two of my patients that come to mind that I think can highlight when hospice may/may not be necessary.

The first patient is a 79-year-old gentleman who had been residing at the nursing home for over 6 years. He had dementia and progressively worsening kidney disease. He had a very caring nephew who lived out of state that I was in contact with regularly. As the patient’s kidney disease worsened, it became apparent that without dialysis, that his life expectancy would be limited. Because the patient’s original wish was clear (when he was competent before his worsening dementia) that he would never want dialysis, I began having discussions with his nephew about hospice. His nephew opted not to sign up. The main reason he made this decision was because he knew that his uncle was not a sociable person at baseline. He did not like to socialize or visit with anyone. The patient’s nephew also felt that all of his uncle’s needs could be and were adequately attended to by the staff at the current nursing facility. There were no family members in the area who would benefit from bereavement services after his uncle’s death and I felt confident that I could ensure that the patient’ remained comfortable at the end of his life. The patient passed away peacefully and comfortably at the nursing home without any hospice services.

In contrast, I cared for an 89-year-old elderly lady with dementia who had been living in the nursing home for years. Her health began to deteriorate and it became clear that her life expectancy was less than 6 months. I began discussions about hospice with her adult daughter. Because her daughter lived locally in town, she was able to visit her mom almost daily. She shared with the staff and me that her mother was a socialite and loved meeting new people and being in new situations. In fact, she shared a picture book of her mother looking glamorous as she traveled the world. As the patient approached the end of her life, she became nonverbal. Her daughter opted to sign her mother up for hospice services. New nurses and new faces did not seem to bother this patient and actually seemed to be welcomed by her. Additional hospice staff would visit regularly and offer support to both the patient and her daughter. This patient also passed away in her home (the nursing home) comfortably and peacefully …with hospice services.

There are no cookie-cutter recipes for what type of patient would benefit from hospice services. A better understanding and realistic expectation of what hospice is meant to provide and what hospice can offer to patients and their families is important. Speaking openly with the patient and their physician(s) can often help families make the right decision. Hospice is a service that should offer comfort and support, not stress or dissatisfaction.

“Wherever the art of medicine is loved, there is also a love of humanity”. Hippocrates

I spent 4 years in medical school plus an additional 4 years of residency and fellowship training learning the Science of Medicine. It was not until I was practicing medicine on my own that I finally began to learn and appreciate the Art of Medicine. It is through my patients and my relationships with them that this is so.

It was 10 years ago when I first met one of my most favorite patients; for privacy purposes, I will call her Ms. Lilly. Ms. Lilly was only 74 years old at the time that she entered my nursing home. She came over to me as a patient on hospice (which means that her life expectancy was anticipated to be only 6 months or less). After reviewing her medical records, I could see why she was on hospice. She suffered from severe rheumatoid arthritis, a condition that ultimately led her to become immobile and bed bound. This in turn resulted in her developing a large, stage 4 bedsore (which means that it was a very deep pressure sore that was unlikely to ever fully heal). The pain from her rheumatoid arthritis and from this deep pressure sore was very difficult to control and she required very high doses of pain medication. When I first walked into the room to meet her, I expected to find a nonverbal, debilitated and frail old lady lying in bed. Instead, what I found was a smiling, pleasant and completely alert lady who greeted me. As expected, she was lying in her bed, but other than that, she knew exactly where she was, why she had moved to the nursing home and why it was that she was on hospice. She had previously been residing at a board and care home and this was where she developed her bedsore and that was why she was moving to a nursing home. In most instances, board and care facilities are not licensed or equipped to care for people who have any skin issues or sores that extend beyond a Stage 2 level ulceration and thus, patients must be moved out.

The first thing that I discussed with Ms. Lilly as her new doctor was what her “goals of care” were for herself. She indicated to me that she had a strong desire to continue living and to attempt to heal the wound. Her pain was not well controlled at the time and as a result she required high doses of narcotic pain medication. Over the following 6 months, the staff at the nursing home worked hard and was able to eventually heal her bedsore and I was also able to get her pain under better control. She was then discharged/released from hospice and arrangements were made for physical therapy to work with her until she was strong enough to transfer herself from her bed to a wheelchair.

Over the next many months, Ms. Lilly became a visibly prominent member in the nursing home. She could be routinely found sitting in her wheelchair in one of the main hallways of the nursing home greeting anyone who passed by. Most of the staff (and even visitors and family members of other residents) got to know her by name and would greet her in return. When she wasn’t greeting people, she could be found in the activities room enjoying music or in the courtyard visiting with her family. She also spent many hours in her room reading. After 4 years of living at the nursing home, however, Ms. Lilly started to become somewhat discouraged. When I asked what was bothering her, she mentioned that her vision “was going”. She was afraid that she would not be able to read anymore as this was one of her most favorite pastimes. Upon examining her, I discovered that the cause of her visual problem was that she had cataracts. As a result, she underwent an uneventful cataract surgery and was immediately able to READ AGAIN!

Her time at the nursing home over the last 10 years was not without any incidents, however. During her stay, she was treated for pneumonia a couple of times, several bladder infections and even one episode of influenza. Surprisingly, she managed to recover quite uneventfully through each of these medical hurdles.   There was one time, however, that I thought I would lose Ms. Lilly.

As I entered the nursing home one morning, a nurse told me that Ms. Lilly wasn’t feeling too well. I immediately went to her room and found her looking quite ill. She had a fever and was nauseated with no appetite. When I examined her, I found that she had significant tenderness on the right side of her abdomen. “Is it another urine infection doctor?”, she asked. Unfortunately, I knew that it was not. As I recalled, several months earlier, she had had an episode of abdominal discomfort and a low appetite then. At that time, I had diagnosed her with gallstones, but that episode ended up resolving spontaneously. Given her age and existing medical conditions, both she and her family decided not to pursue any aggressive medical intervention (such as surgery for removing the gallbladder). We all knew that it was possible that Ms. Lilly could have another “gallbladder attack” at anytime, but she was willing to roll the dice, as she did not want to undergo any elective surgeries.

As I sat by Ms. Lilly’s bedside, I told her that her condition was much more serious this time; I suspected that she had cholecystitis (inflammation of the gallbladder). This illness occurs when the normal flow of bile out of the gallbladder becomes blocked and as a result, the gallbladder becomes inflamed. For those of us who are younger and healthier, this condition can be treated relatively easily and predictably. For Ms. Lilly, however, given her advanced age and the fact that she was on many medications (for her rheumatoid) that suppressed her body’s natural immune system, her gallbladder situation became a much more serious and life-threatening condition. Although, Ms. Lilly and her family had previously wanted to avoid any elective procedures for chronic conditions, the circumstances had now suddenly changed. The family asked me what I thought we should do. I walked them through “goals of care” again. I discussed the options and risks associated with treating (or not treating) her current condition. Ultimately, we all agreed that her current quality of life at the time was GREAT…and was worth trying to preserve. She decided that since there was a definitive treatment for her condition that she would want to proceed with that treatment option. Ms. Lilly was subsequently admitted to the hospital and was treated initially with intravenous antibiotics. When her condition did not improve on antibiotics alone, she proceeded with the surgery to remove her gallbladder.   To everyone’s relief (and surprise)…she survived the surgery! One week post surgery, she returned to the nursing home and began the recovery and rehabilitation process. It took her about one month to finally resume her well-established position in the hallway of the nursing home….but she did it!

Patients like Ms. Lilly really highlight to me the importance of listening to people. It also reminds me that the true practice of medicine is a mix of both SCIENCE and ART. In simple terms, science allows doctors to heal by preventing, diagnosing and treating disease. But the  ART of medicine is that intangible process of using that knowledge to deliver a customized treatment plan for each patient as an individual. It is the relationship that exists between physicians and their patients that is at the core of healing. This begins with hearing and understanding. If I had not taken the time to sit down and listen to Ms. Lilly when she was first admitted into the nursing home, then I may not have been blessed with such a wonderful physician-patient relationship. Ten years after checking her into the nursing home as a hospice patient….I now look forward every day to seeing Ms. Lilly’s precious smile and wave as I enter the nursing home.

I think it is important for anyone who is entering a nursing home (or considering a nursing home for their loved-one) to enter with eyes wide open. The truth may be alarming and somewhat disturbing, but it does not change the reality of nursing home care. I do think that the nurses, physicians, nursing home administrators and staff are trying to do the best that they can for the patients they serve. However, the reality of the matter is that nursing homes are a business. Would it make sense for the nursing home to spend more money than it makes? I am not an accountant nor am I a nursing home administrator, but I do think that in order to achieve the quality of care and outcomes that we all expect to receive and that we imagine we “should” receive….the nursing homes would end up being deeply “in the red”… and cease to exist.

Today’s patients in the nursing home are much sicker and more medically complex than they were even 10 years ago. What many people don’t realize, however, is that nursing homes are still operating under healthcare laws that were passed 30 years ago. The Federal Nursing Home Reform Act or Omnibus Budget Reconciliation Act (OBRA) of 1987 created a set of national minimum standards of care and rights for people living in certified nursing facilities.

The Nursing Home Reform Act requires nursing homes “to provide sufficient staff and services to attain or maintain the highest possible level of physical, mental, and psychosocial well-being of each resident”. The law provides some specific requirements for staffing (such as a minimum of 8 hrs/day for RN staffing), however it does not provide specific nurse-to-resident staffing ratios for RNs, LVNs, LPNs or CNAs. If a nursing home only met the federal nurse staffing requirements as provided by the law, a resident would receive only 20 minutes of nurse time PER DAY! Most states have additional laws that exceed the federally mandated requirements, however, this is not by any significantly meaningful amount. Many states have requirements that require a total of approximately 3 hrs of nursing care per day. Whether this is performed by a certified nursing assistant or a licensed nurse (LVN, LPN or RN) the total is still only 3 hrs/day. This means that for the other 21 hours remaining in the day, the patient is likely not being attended to by any nursing staff. For most people and patients, this comes as a complete and total surprise. Many assume that there is an aid or attendant caring for those in nursing homes constantly. This is an example of where expectations and reality do no align.

In regards to attending physician requirements, the federal law only requires that a physician see the patient in nursing homes once every 30 days. This does not mean that a physician is unable to see the patient more often than required, however, there is no law that mandates that a physician see a resident anymore that once a month. Many of the patients that I attend to today are leaving the hospitals after an acute illness. Some patients even transfer directly out of the intensive care unit (ICU) at the hospital straight to the nursing home. Perhaps the required “once a month visit from the doctor” seemed reasonable 30 years ago, but I would say that for the majority of skilled nursing home patients, this is not sufficient (nor safe) for competent management of the patient.

Many healthcare organizations, hospitals and nursing homes are working closely together to try to improve overall patient outcomes. Hospitals and nursing homes are trying to better coordinate care. Physicians and medical groups are trying to offer a more consistent presence in the nursing home setting. One of the main problems, however, is that our government (Medicare) and current reimbursement model cannot afford the true cost of this higher level and higher quality of care that is required by this frail and sick population.

What can we possibly do to improve our own expectations, experiences and outcomes in the nursing home then? Because legislation through government often takes the longest time and is the most complicated and challenging to implement and change, I will offer some of my own personal opinions and suggestions that I think any one of us (as a patient or loved one) can use to improve our own outcomes and experiences in a skilled nursing facility. Rather than relying on or expecting that “the system” could/should meet all of your medical needs, we need to be better informed in order to take necessary steps to help ensure that those medical needs and requirements are met. The nursing home is, “technically speaking”, supposed to provide for all of your needs. The nursing homes are not supposed to suggest or require that you hire outside help. However, now that you are armed with the knowledge that nursing homes can meet all of their legal “staffing” requirements and obligations and likely still not be able to meet your personal healthcare needs, I hope that you can begin to now see that in order to insure YOUR best outcome, you will need to augment and take on some responsibility for yourself. Sure, you can try to “demand” that the nursing home to do everything that I suggest…because, you have the “legal right”, but the reality of it is, it will most likely NOT get you anywhere and leave you with only stress and frustration.

Here are some take home points for you to ponder:

#1 You must understand the inherent shortcomings of the current system. I have already discussed the minimal staffing requirements set fourth by the government. You must expect that the nursing home where you or your loved one is residing is operating at the bare bones minimum of this staffing requirement that has been set forth by law. If you understand this, then you will be able to “fill in the gaps” where it is medically necessary or functionally beneficial. You will also not be surprised or disappointed by the care that you receive because your expectations will now be more in line with reality.

#2. Know whom to talk with to help you meet your needs. Every nursing home is required to have a Director of Nursing (DON) and administrator (or executive director). If you have ANY nursing complaints or clinical care concerns, you should address these with the DON. If you have concerns re: staffing, safety issues or general nursing home concerns, the administrator is whom you should ask to speak with. If you want to bring in your own private nurse or personal assistant, you do have to go through the appropriate channels in order to make sure that your private nurse or assistant is authorized to be in the facility and provide you with their care.

#3 Ask for a list of your medications upon admission. Draw up your own checklist for the medications-you can make your own grid or print out this MEDICATION SHEET. If you happen to be the patient (and are alert and able to keep track of your medications) then keep the checklist at your bedside and keep track of what medications you are given by the nurses. If your loved-one is NOT alert, then I would strongly recommend that you HIRE an assistant (this does not have to be a nurse…just someone who is able to read and check off the medications on the grid) to help ensure that the patient/loved-one is getting what they are supposed to be getting. Believe it or not, even at some of the “best” nursing homes in America, medication errors occur. I have seen patients not receive medications that were prescribed; receive incorrect medications; and receive incorrect dosages of medications. I have seen patients who should have their blood sugar or blood pressures checked before medication administration, not have either or both performed. The list can go on and on. Medication errors are especially concerning in patients with dementia, who cannot advocate for themselves.

#4 Understand your disease process and why it is that you are in the nursing home in the first place. It is extremely important for patients to understand their illnesses and why they are taking the medications that they are on. It is also very important to understand if you have any prescribed physical limitations from your doctor, such as not putting weight on a recently operated leg when you walk as an example. Also, a doctor may want you to get weighed daily or have a certain consistency or amount of liquids. You should write this information down and by asking questions and understanding your illness(es), you become a champion in your own recovery.

#5. Find out if your loved one is eating adequately at mealtime. If someone is not eating, check with the staff to see if you can bring in food for your loved one. Many elderly people are creatures of habit and routine. Adequate nutrition is imperative for your optimal recovery. It is difficult, though, for most nursing homes to cater to specific requests from each and every resident. For example, I had one patient who, for over 40 years of her life, had a breakfast consisting of plain cheerios, strawberry yogurt and a boiled egg every morning. She had a hard time eating the scrambled eggs, sausage and white toast served at the nursing home. Most nursing homes will allow families and patients to bring in specific foods to serve it (hot or cold) at mealtime. You do need to be sure and check if the texture and type of food you bring in is allowable.

#6. Begin thinking about steps that need to be taken to get home as soon as possible. I have taken care of people who want to go home as soon as they step foot in a nursing home (not always safe or advisable). I have also taken care of those who refuse to go home even though they are medically stable enough to return (need to go home). I advise people to go home as soon as they are medically able to. People are more comfortable in their own environments are often heal and sleep better in their own homes. That said, things need to be properly planned out in order for someone who has recently been hospitalized, to succeed at home. This takes time and planning…which is why I suggest that “discharge planning” begins immediately upon admission to either the hospital or nursing home. You need to think about things like: are the doorways wide enough for a walker or wheelchair? Will a ramp need to be installed to get into the home? Will caregivers need to be hired upon return home? Who will cook? Who will drive the patient to appointments? Who will pick up all the new prescriptions and make sure the medications are administered correctly? Can the patient return home or do you need to think about alternative living situations? The ultimate goal of anyone overcoming an acute illnesses is to fully recover and not return to the hospital. So one does need to ensure that all of these questions are addressed prior to the patient returning home.

I hope that you do not find yourself or a loved one in a nursing home anytime soon, but if you do, you now know some steps that you can take to ensure a successful recovery and rehabilitation. As much as you may find it hard to believe (when you enter the nursing home), most people do get better…recover and return home.