Living Will – II.  [A wife in a coma at a local nursing home is visited by her husband each day from 7 am to 4 pm.  He attends to her and, although she has a living will, he chooses not to enforce it.  Living Will I was his story. This is hers.]

She drifted and dreamed, sometimes so vividly that she couldn’t tell if she was dreaming or simply thinking about him.  He was always the common thread - his voice, touch, his gaze and his scent.  His scent! She always believed that the first way to tell if you were compatible with someone was to trust your nose.   It sounds awful, she thought, but when she first kissed him and pressed her face close to his, she knew she was home.  “He smelled like home”, she thought.  What a way to begin a romance!

It seemed like she was off in the distance watching a movie of her life.  She knew things had changed dramatically.  She remembered the day that she felt the pain in her head and then the drowning and the darkness.   She eventually came out of the dark but it was not like being awake.   She felt that she was floating through images, feelings and thoughts.  She sensed periods that were brighter and warmer than others.  These were usually the times when she sensed that he was with her or nearby.   But as hard as she tried to reach him, she could not.

His connection to her had always been intimate.  He touched her emotionally and physically.  He looked directly into her eyes when she spoke.  He was meticulous in his attention to her.  He listened.  He was happy when she was happy.  He wore an aftershave that she bought him even though she knew he didn’t like it.  He did as much for her as he could and she for him.  This was “big” love she thought.

She doted on him.  She wondered how he was doing without her help.  She wanted to reassure him but didn’t know how.  She felt as if she were locked in a vault.  There was no way to communicate with him, to tell him that she was still there, still with him.  Or does he know?   He always had a way of knowing what was happening inside of her.  Sometimes he knew what she was thinking before she did.  She didn’t want him to lose track of her.  She wasn’t ready for that.  On some level she knew he was still keeping guard and still with her.  This was comforting but also sad because she couldn’t tell him she knew.  

She began feeling that she could somehow rejoin him if she could just figure out the mechanics of it.  She felt so close to him sometimes that she could hardly bear it.   She concentrated hard at those moments, urging her body to respond and to reach out but it seemed like an impossible task.   The attempts to touch him were so frustrating.   The longing pushed her back into the comfort of her dreams.  She was with him in the bright sunlight walking by the lake.  She felt the sun and smelled the water.   She was enveloped by his love.   She was intoxicated by her love for him.   When she was torn from these memories she felt the pain.   She wanted to reconnect with him to hold him and touch him and not to leave him ever again.  

She became aware that the moments of pain began to dominate her.   Being that close to someone you love without being able to tell them so, was excruciating.   The communication of their feelings was crucial.   “I know how you feel,” he would often say.  And darn if he didn’t know how she felt.  It seemed that everything that happened to her was understood by him.   He used to say that all of the experiences of his life prior to meeting her happened so that he would be able to love her.  She understood that this relationship was a rare gift.  It’s not like she dated that much.  She could not believe it random.  There must be some reason we are together, some purpose.  They would spend hours talking about how they felt.  He believed that in order to really understand an issue, you must not give in to frustration. If you abandon an issue, true feelings and issues will not emerge and the real problem will not be identified and solved.  He said emotional work was like water circling down a drain.  You talked about the same things over and over again each time getting closer to the truth.  In some ways, she felt that she too was circling above a drain.  Her memories were like the water in the sink.   What she feared most was that in the end she would disappear and so would he.

At that moment, for some unknown reason, she felt closer to him than she ever did but also felt protective.  There was some shift in her universe but she could not readily tell what it was.  She felt a sense of urgency and some feeling that he needed her.   These were not common feelings for her and she suddenly felt panicky.   She was aware that he needed her.   She was trapped in her box but she had to get out.   Now, more than ever, she had to escape…  To be Continued.

[A wife in a coma at a local nursing home is visited by her husband each day from 7 am to 4 pm.  This is his story]

She laughs and asks him how he feels, her hair shining and eyes bright. He loves her eyes - they were the first thing he noticed about her.  She actually smiled with her eyes, he thought.   So, how are you, she asked?    Did you remember your meds?    How’s your blood pressure?  He knew she loved him

He awakened.  He felt cold.   It was morning.  Did he sleep?  Of course he did, for he dreamed of her.   He felt a familiar pang of emptiness realizing it only a dream.  He dismissed it quickly and groaned to his feet.  I have to have that furnace looked at, he thought.  It shut down when it needed a cleaning - no air.  His mind raced back to the time when she couldn’t catch her breath - the fear in her eyes, the panicked phone call and the emergency room.  A stroke they said.  Very serious, she may not make it.  A respirator in the hospital but she eventually breathed on her own and finally went to a skilled nursing home.  No one knew if she would recover.  After 18 months in a coma, no one thought she would, except for him.

Not now, don’t think now, there’s no time.  Time to get ready and get out to the car, he thought.   Mornings now reminded him of the army.  You barely have time to wake up before a life and death struggle.  No time for regrets, fantasies or hopes - duty and honor and one foot in front of the other.  

 He escaped to the shower, which he loved, because it warmed him. He wished he could wear the wool shirt but it was too itchy!   Everything itched - bills, repairs, friendships, hobbies and commercials, those damn commercials!  My life, he thought, has come down to someone trying to convince me to do something I don’t need or want.  When had he become so annoyed by everything?  He knew.  It was the day when the smile drained from her eyes.  He knew what he really wanted.  He wanted that smile back.  He worried he would never see it again.

He dressed quickly. Before he left, he took out two handkerchiefs and sprayed each carefully with just a bit of aftershave.  He never wore aftershave but it was nice on his hankies.  He had to rush; he didn’t want to be late.

Parking was too far away even at 7:00 am.  His heart beat faster on the walk.  He felt the warm air as he walked into the lobby.  He took the familiar path through the halls to her room.  He still felt excited when he saw her.  She didn’t see him.  Those eyes, her eyes, never opened anymore.  He thought he saw an occasional flutter.  Her pillow was not right.  The bed, which was filled with heated, rolling sand, was disorganized.  He kissed her and fluffed her pillow.  He held her hand.  She's cold he thought.  He placed it under the blanket close to the warm sand and covered it with her blanket.

Her breakfast arrived.  They thoughtfully brought it for him since she was tube fed.  He sat and talked about the furnace, the house and his blood pressure.  He knew she wanted to know.  How long had it been since she couldn’t breathe - one year, two?   No time for regrets!  She is here now and she needs him.  He loves and needs her too.  He watches her clench her fists and he pretends she is responding to him.  Sometimes she grips so tight that her nails dig into her palms.

The staff asked about removing the tube.  No, the time is not right.  Her Living Will permitted him to direct her end of life care.  He knew he could order them to withhold treatment but he would not - not yet.  He would care for her.  There was much to be done.  Her room always needs some straightening.  Her roommate was sometimes loud and he made sure the curtains were pulled.  She liked her privacy.  He was glad she didn’t realize where she was.   He knew she wouldn’t be pleased.  But he knew that, when they were together, everything was bearable.  Lunch came.  He picked and watched as she clenched her fists.  As the afternoon drew down, he sat close, opened her hands and held them and obtained his own nourishment. 

He talked to the nurses and towards the end of the day her doctor appeared.  No change. Keep her comfortable.   Reconsider the feeding tube?   Not today!   She needed him today and he needed her.  She loved him.  He stayed till 4 and before he left he kissed her cheek. She is still soft, he thought.  She is so beautiful.  No sadness - no time for that.  This was his life and hers.  They were both on rolling sand.   She would do the same for him. 

He had to get home and get the furnace looked at and schedule an appointment with his doctor.  She would want that.  He turned to walk out and looked back.   He remembered something.  He walked to her bed and reached into his pocket and took out two hankies and rolled and folded each and carefully placed one in each hand.  “I’ll see you tomorrow hon, he said” And as he left, he thought he noticed her hand move. 

 To be continued…

 Accreditation

Federal law dictates that no one may help a veteran in the preparation, presentation and prosecution of an initial claim for VA benefits unless that person is accredited. The only exception to this law is that any one person can help any veteran — one-time only — with a claim. To help any veteran a second time requires accreditation.

VA recognizes 3 types of individuals for purposes of accreditation.

(1) Accredited attorneys (2) Accredited agents and (3) Accredited representatives of service organizations. (Veterans Service Officers)

In order to be accredited to help veterans with new claims, an individual desiring this certification from VA must submit a formal application, must meet certain character requirements and work history requirements and — except for attorneys - - must pass a comprehensive test relating to veterans claims and benefits. There are also requirements for ongoing continuing education.

Help a Veteran with a Claim?

VA interprets its prohibition on preparing, presenting and prosecuting a claim to mean that talking to a veteran or a veteran’s qualifying spouse after that person has indicated an intent to file a specific claim for benefits requires accreditation. Anyone can talk about veterans benefits in general with any veteran and need not be accredited. The point at which discussion narrows down to specific information about the veteran’s service record, medical conditions, financial situation including income and assets and other issues relating to a claim specific to a veteran or dependent triggers accreditation. According to VA, discussing the specifics of the claim means that the veteran has expressed an intent to file an application for veterans benefits, and at this point, the consultant helping the veteran must be accredited.

It does not matter whether physical help with filing the claim is provided or not. The need for accreditation occurs at a much earlier stage than becoming physically involved in the claim.

Many individuals or organizations who are not accredited and who are promoting and helping veterans obtain their benefits are often attempting to work under someone who is accredited. Most of these individuals are doing it wrong and not complying with the law.

These individuals make sure that the application is done by an accredited attorney or an accredited agent. In some cases, non-accredited individuals will refer veteran households to a local veterans service officer (an accredited representative of a service organization).

Unfortunately, most individuals who are not accredited and who are operating with someone who is accredited are still illegal. This is because the non-accredited individuals become involved in the claim by providing advice after an intent to file and in many cases they help gather documents and other pertinent information. As mentioned above, these activities require accreditation. The only way that a non-accredited individual can operate legally to assist someone who is accredited is to immediately refer a veteran or dependent to an accredited person when first understanding an intent to file a claim. No additional help or advice may be given after the intent to file has been recognized.

Many accredited attorneys are also not operating legally. Only an accredited attorney — one-on-one with the client — may be involved with a claim. Anyone else, inside or outside of the office, cannot assist with the claim except under certain limiting conditions. Specifically, in order to work under an attorney, a non-accredited assistant must either be another attorney in the office, a certified paralegal in the attorney’s office or an office law student or an intern. The client must also sign a consent letter allowing this arrangement. This consent must be filed with the original application. No other arrangement is allowed. Please see 38 CFR § 14.629 for an explanation of this requirement.

About Fees

Generally, no individual or organization may charge a fee for help with filing an initial application for benefits. There is only one exception to this rule and that is under the third-party exemption in 38 CFR § 14.636 (d). The requirements under this exception are very specific. In our opinion, no one that we know of, who is charging a fee, thinking he or she is operating under this exception, is doing it legally. Here are the ways these people are violating this law. (In most cases those who are operating illegally are engaging in all 4 of these unlawful activities.)

(1) The person paying the fee is not a disinterested third party as required by law. (2) The person filing the claim is not submitting the fee agreement to VA general counsel as required. (3) The person filing the claim is not submitting the disclaimer to General Counsel as required. (4) The fee is contingent upon a percentage of the amount of the approved benefit.

We are seeing various financial arrangements for filing claims that are disguised fees in one way or another. As a general rule, anyone who would directly benefit financially from helping a veteran file a claim — whether a direct fee is charged or not — is in essence charging a fee. We know from numerous discussions with representatives, this is the way VA General Counsel treats these arrangements.

If you are working with someone who is not operating legally as outlined above, you should stop using that person’s services. If you yourself are operating in a manner that is not in accord with the conditions outlined above, you must stop doing that.

We have worked with hundreds of individuals facing the prospect of long term care.   We define “long term care” broadly to mean any physical condition where an individual requires the assistance of someone other than herself to conduct her daily activities.  Medicare defines this as medical and non-medical care to people who have a chronic illness or disability.   For most individuals in Pennsylvania this care takes place in their home and is known as “domiciliary care.” This care may be provided by family members or by home health aides or live-in aides.  

This need is great.  In Pennsylvania there are between 2 and 3 million people over age 60.  Almost 3 in 4 will require long term care before they die.   And nearly 80% of these patients will receive this care in their home.  Given the scope of this problem, it is surprising how little is known about this care and the available funding from state agencies.   The cost to the family without public funding is often prohibitive.  The costs may run from a few hundred dollars a month to thousands if live-in aides are required.  Caregivers who work for state licensed agencies are billed hourly at rate of about $10 to $25 for self-employed caregiver or caregivers hired directly by family.  For caregivers hired though an agency, rates are generally 40%-70% higher, since they are employees of the agency.  Live-in aides’ rates are $120–$200 per day for services.  The rates are 20-30% higher if there is a second care recipient. Live-in aides are available through agencies as well as direct hire.  Agencies' fees for non-medical home care are traditionally not reimbursed by State, Federal, or private health insurance. However, private long-term care insurance will often reimburse policyholders for part of the cost of non-medical home care, depending upon the terms of the policies. 

Sometimes a family requires a few different aides to perform the various duties required to keep a patient at home.   If the patient is rehabbing from a stay in a hospital, Medicare may be available to cover some of the medical costs.   This is often short-term and thereafter the costs remain with the patient.   In Pennsylvania, the Department of Public Welfare and Department of Aging has “Waiver” programs available to certain patient groups.  For our elderly clients who would otherwise require treatment in a nursing facility the Aging or 60+ Waiver provides attendant care, companion services, transportation, meals and other services to qualified individuals.  

The qualifications are that they are 60 or older, disabled (as per Area Agency on Aging functional review) and are nursing home eligible.  The patient must also have income less than $2,022 (300% of the federal benefit rate) and countable resources lower than $8,000.  “Countable” resources do not include the home where the patient resides.   Married couples have an income cap of $3,033 but have to qualify financially through the regulations pertaining to married individuals seeking medical assistance.   The major difference for eligibility between this program and medical assistance for nursing homes is that it is not an “entitlement” which means that you may not get this program even if you do qualify.   In most counties in Pennsylvania there are waiting lists for this program.   Since Pennsylvania ranks second in all states with the number of individuals over 65, there is a great demand for these programs sometimes overwhelming the Area Agencies.   The waiting lists for all waiver programs have been estimated to be in the tens of thousands.   The need is great but the funding limited.   The Pennsylvania Association of Area Agencies describes their funding as follows:

In 1965, the United States Congress enacted the Older Americans Act (OAA) establishing the Administration on Aging (AOA) and state units on aging in order to address the social service needs of older Americans. The OAA is the primary vehicle responsible to drive and thus promote the delivery of social services to the aging population; and its mission is purposefully broad: to help older people maintain maximum independence in their homes and communities and to promote a continuum of care for the vulnerable elderly.

With the passage of the OAA, as expected the original primary source of funding for Aging programs in the Commonwealth of Pennsylvania was the Older Americans Act with supplemental funding support from Title XX of the Social Security Act. In 1971, however, the General Assembly in Pennsylvania created the Lottery Fund, whose proceeds were purposefully targeted to provide property tax relief for the elderly in the Commonwealth. In the years that followed, the network of local Area Agencies on Aging (AAA) serving the Commonwealth’s 67 counties began to receive Lottery Funds in the form of an Aging Block Grant. The Aging Block Grant funds allowed the local AAAs to serve older adults in need of supportive services; and when Title XX funding disappeared, the General Assembly expanded the Lottery Fund to provide funding for rent rebates (administered by the Department of Revenue), free and reduced-fare transportation services for older Pennsylvanians and reduced vehicle registration fees (administered by the Department of Transportation). Lastly, the General Assembly again expanded the benefactors of the Lottery Fund to include the PACE (Pharmaceutical Assistance Contract for the Elderly) Program. While Lottery games grew in popularity and the Lottery Fund enjoyed significant growth, OAA funding stagnated and the very successful Pennsylvania Lottery has become the primary source of funding for services benefiting older Pennsylvanians. (Oct 2009 Policy Position)

For those individuals who are not able to obtain Waiver benefits, the “Options” and “Bridge” programs may be beneficial.  Additionally, there is progress being made in Pennsylvania on getting Medical Assistance for individuals in assisted living.  Talk to your elder law attorney to see if you qualify.

The Seventies.    This is the time to really think about long term care planning.  1 out of 2 people spend time in a nursing home before they die.  At this age, you should NOT consider investments that tie up your money.  Do NOT purchase annuities without thoroughly understanding their limitations.   Pare down your life insurance.  Look at pre-need funerals instead.   If you want to make gifts, do it now.   Gifting carries penalties in terms of long term care planning.  In your early seventies you can expect several more years of good health so now is the time to think about a gift program.  Long term care insurance is still a viable option.   Consolidate your assets.  Understand your health insurance and don’t buy on price alone.  Make sure that you have chosen advisors that you can rely on in times of crisis.   If you have disabled kids, now is the time to think about funding a special needs trust.  Do NOT throw your old bank statements or check copies away! Save at least 5 years’ worth.  Document gifts you make.   Save everything and keep it organized.  Do not keep envelopes.  Use folders.  Save all transaction records from accounts you close.

The Eighties.    At this point, you should be paring down even more.   No gifts over $500 without understanding the impact they may have on your long term care planning.  Make sure your health insurance protects you if you enter a nursing home rehab.   Cash your life insurance.   Use pre-need funerals instead.   No annuities under ANY circumstances.  No savings bonds either.  These assets are too cumbersome and slow you down.  Reduce retirement accounts in a systematic way.  I really want my clients in this age group to be Afast on their feet.@   If you are married, understand what will happen if one of you enters a nursing home.  Find out where you stand and don=t stay up at night worrying about it.  If your spouse doesn’t= want to go along, then drag him along.   It will be your job to clean up the mess if he doesn’t.  I will say this again, do NOT throw bank statements or check copies away!  Save 5 years’ worth.  Document any gifts over $500.   Do not take large cash withdrawals.  Save everything and keep it organized.  Use folders not envelopes.  Save transaction records from closed accounts.  Do not close accounts for cash.   Cash gifts are not safe. 

The Nineties.   Relax and enjoy the contentment that comes from following the advice given above.  One bank account!  Put it in joint names with a trusted child.   Direct deposits are fine.   IRAs should be down and insurance cashed.   Powers of Attorney are current.   Arrange your assets so your estate doesn’t have to be probated.   Make sure your home can get to your heirs without legal intervention.   Get comfy shoes and a warm blanky.   Watch the Phillies and Eagles.  Eat hotdogs if you want.   Try to avoid those big funny-looking sunglasses!  Visit your lawyer and make sure he has followed his own advice.

Who are they? 

These days you are hearing more and more about “elder law” and we use the term to describe our law practice.  But what is it and who does it describe?   Who are our clients?   The simple answer is that they are the elderly — by other names old folks, seniors, matriarchs, aged, experienced, mature, seniors, venerable and veterans.   I don't really think these descriptions are helpful.  In my view, my clients are survivors, lions, martyrs, courageous, defiant, indomitable, stalwart and undaunted.   

How else can you describe an 85 year old who still fiercely loves his wife and holds her hand at every meeting but can barely walk because of bone cancer he has fought for a year – a year!  He doesn’t believe in pain medication.  So he puts up with the pain and puts on a smile.   He never forgets to ask how I am doing and how I am feeling.  He always brings a new story about his life - a man who improves your day just by being in the office. 

What about the 79 year old impeccably beautiful wife who is trying to hold her life together as her husband struggles to break free of a ventilator in order to “graduate” to a nursing home?   We see numerous spouses whose vacation homes are now just a problem asset that must be disposed of rather than dreamed about.  Who are they again?  They are an endless stream of dashed hopes and broken dreams.  They have new partners: nurses, nursing homes, financial officers and social workers.   Their comfortable lives tragically and suddenly disrupted by the relentless onslaught of age and ill health.   They are in completely new circumstances trying to learn new rules.  They must adapt and conform and fight their fears while at the same time losing the love of their life.   They must do it when they don’t feel well themselves.   We have frequent visits from an 84 year old husband between dialysis treatments to fetch more paperwork for an unrelenting caseworker at the County Assistance Office.  Why didn’t he have receipts, they asked?   “Why would I need receipts, I was just living”, he replied.   “I didn’t think about a nursing home when I gave my son a wedding gift and my daughter a Christmas present.  Was I wrong about that?”  

They just want to be OK, to make it through to help their soul mate who now doesn’t recognize them.   My bone cancer friend said that “getting old is not for the faint of heart” and how true that is.   I see nothing but incredible bravery in the face of just overwhelming pressure and pain.  The funny thing is that not one of them asks why?   There is no self pity or feeling that life is unfair.  Not one of my “elders” has asked “why me?”  It is just a part of life, as surely as their school lives, careers, families, children, dreams, hopes, and fears.  

I see myself and what lies in my future.  That may be the scariest part of becoming so intertwined with these lives.  “We are all on the same conveyor belt” Bill Cosby supposedly said.   We sure are, but the road ahead on the belt sure seems shakier.    Down that belt seems fraught with pain, loss of control and loss of identity.  Someone else said that death is an issue that is most keenly felt by the middle aged.   I can tell you it is really felt by the middle aged lawyer working with the elderly.   Every day brings new circumstances and new pain and new families coping with the inconceivable.  

“Dad fell off a ladder. He was 85 and they say he will never leave the nursing home.  Why was he on that ladder cleaning out the gutters after dark!” a distraught wife and daughter recently reported.   I guess he never realized that anything could go wrong on a ladder in the dark.  The amazing thing was that he was the second eighty year old who fell off a ladder that very week!  Good metaphor for how we sometimes feel in an elder law practice - on a ladder in the dark.   The practice is always changing.  It is always under attack.   We are "hiding" money.   We are "cheating" the government.   The people who don't do this work but make ther rules never really get it.   My Client's do not care about the money, they care about losing everything of course, but by the time we get people in our office it is really about quality of care and quality of life.   They are barely able to handle the medical crisis and when you through the financial on top of that and all the rumors and falsehoods, it is quite overwhelming.   Much of this was brought on by politicians who implemented laws they didn't read, thinking they were stopping some abuse.  They don't realize that the abusers do not come to see lawyers.  The folks that see us need help, not ways of dumping their problems on the government.  The system is now so complex that lawyers are absolutely a necessity.  In the old days - before well meaning politicians plugged some loopholes, people could navigate the system themselves and not be blindsided by silly rules directed at abuses that never really amounted to that much to begin with.  Now, in Pennsylvania, if the parents mess up their finances, the kids have to pay for their medical expenses.  And how do they "mess up?"  By taking money out of ATM's.  By making Christmas gifts.   By paying for a grandchild's' wedding.   By throwing a four year old bank statement away.   The cost of implementing these rules have far outweighed the perceived benefits. 

Elder law attorneys do not hide money.   We get people from their homes to independent apartments or assisted living facilities.  These facilities often decide that whatever the parent has - belongs to the facility.   Complete disclosure is necessary even to get in.  Dad or mom HAS to have at least enough money to pay for three or four years of private pay.   If not, they are summarily rejected.  If they have enough money then you have to convince them to go.     It is never easy – for them or for their families.   We sometimes have to wait for mom or dad to have a “medical event” just enough to let their families intervene after a few days in the hospital.  We wait for a bed to open up at the “good home.”   Lying about one’s age has turned into lying about one’s County of residence to get into the best home in another County.   I assist our clients in their move from hospital to nursing home and eventually to the funeral home.   It really is a conveyor belt at that point. 

And in the face of this, we have people who trudge in and “bring the paperwork” sometimes for husbands who never had a nice word to say to them - ever.  Or for mothers who did nothing but berate and demean.  There are caretakers who stay when they shouldn’t.   These are the same caretakers who, because of the stress, are twice as likely to end up in a nursing home themselves.   If you are a 90 year old caretaker – what are your chances?   None of this is for the faint of heart.  That is for sure.   And who are they – they are you and they are me.  They are all of us. The 92 year old who asks every day why she was put in a place with so many “old” people.  A wife who wishes she hid the ladder.   A daughter who waits for a thank you from her mother.   This is elder law.   It is not for the faint of heart. 

  An article from Kaiser Health News today accurately notes that living wills are being ignored.  See here - http://bit.ly/bSVCkR .  The writer points out that only 36% of Americans actually have such a document.  What the author doesn't point out is that, of the people who do having "living wills" and actually can locate them when they go into a hospital - hospitals are required under the Patient Self Determination Act to advise people of their rights to accept or refuse treatment and to ask the patient if they have an advance directive - less than 10% of these documents

    1.  Actually make it into the medical records.
     2. Acurately reflects the wishes of the patient.
     3.  Are seen by the attending physician ,
     4.  Are morally agreeable to the attending.

This is really not good news for those who have living wills and for those who think they need them.   It is clearly an area of the law that is in transition.  In our elder law practice, we naturally see the impact of the use or misuse of advance directives.   Even the terminology is confusing.  Many people get their "will" and "living will" confused.  The same is true with a Power of Attorney for Health Care and Power of Attorney.   Some make simple statements of what they wish to happen to them if they have an incurable illness.    All of these documents can be brought under the broad category of "Advance Directives."    Let's look at the history of the directive:

    1.  LIVING WILL - Oldest form of advance directive, dating back to 1969 and attorney Luis Kutner.  In an Indiana Law Journal article Kutner proposed the use of long-standing estate law principles permitting the control of property distributions after death (by Will) in health care settings.  The resulting document, which was to be used during one's life, came to be known as a "Living Will."   Living Wills usually contain specific references to certain illnesses and to the treatment to be used or not used during such treatments.  

    2.  MEDICAL HEALTH CARE POWER OF PROXY -  In response to the problems of living wills to acurately predict and describe the medical conditions to be addressed by the doctor and their failure to take into account proper medical procedures, a legal concept used in business law was adopted - the power of attorney.

    3.  ENHANCED DIRECTIVES - The third generation of Living Wills were more enriched documents that described situations and contained more practical descriptions of how and when treatment should be used or withdrawn.  Famous examples of these are the "Values History", the "Five Wishes"  and others that expressed wishes in some non-legal and more personal ways. 

   The problem as I see it is how to make sure that you get your directive, whichever you use, into the conversation with your doctor.  Maybe more important is for you to think about this yourself so you care clear on what you want.   Many of our clients are still afraid of living wills.  They think it is only used to end lives early.  Many don't realize that it is a tool that is only used when all other hope is gone.  I tell families it is for the time when "everyone" knows that treatment is fruitless.  I tell them that they will not have to really search for this as it will appear very clearly before them.  There will not be any doubt.   The problem with all of these documents is that, at that time when it is obvious that treatment is useless, whether the document will be available and will be agreed to and know to the doctor and whether it accurately reflects the patients wishes and whether the doctor is willing to take the requested action.

   A Pennsylvania law known as Act 169 has made this process easier.  This law became effective in January 2007 and authorized agents to act on behalf of patients to remove or withdraw treatment.  In my opinion, this permits a principal to simply name an agents or agents to intervene in the event of terminal illness and take everything into consideration and then instruct the physician to continue or remove treatment.  The physician is able to avoid liability by acting in good faith on these instructions.  If the physician has an ethical conflict with the directive, he or she is obligated to assist in getting the patient to another physician.  We think that this arrangement will permit the agents to intervene in these very complex situations with constantly changing medical conditions in  a way that no document could predict.  Agents are now being permitted to make decisions that they thought they were making under the old law but really were not.  Under the old law, agents were advocates for the patient, assisting in the carrying out of the wishes contained in the directive.  The new law actually authorizes the agents to step into the shoes of the patient and weigh all of the options.  The decision is now in their hands.   I tell my clients to choose good agents and to make sure they know how you feel about these medical decisions.  Ultimately, this should result in having people treated in a manner consistent with their wishes and not simply to help the hospitals bottom line or avoid physician liability. 

    

The Price

Every now and then I am reminded about what is essential in our elder law practice.  I so often get lost in the technicalities of legal work that I sometimes forget what may be my most important role.  That role I believe is to share my experiences with our clients about what other families have done when faced with the decline in health of a family member.  What I often discuss with caregivers is that their problems are not unique to them but are universal.   Many new clients come to me with a sense that their story is unusual or unique and that it may be too difficult to even address.   A story in this months’ issue of Time magazine was incredibly powerful and a reminder to me that I, as an elder law attorney, have a unique role when brought in to assist a family in transition. The times story concerned the author’s failed attempts to assist her sibling in caring for a ailing parent.  The story reminded me of my own family and of the families that I see daily. See So who helps mom?

Just this week I talked with a daughter who felt the need to tell me that her elderly mother's loss of weight was not the fault of her or of her sister.   She explained that she lived in another state, a thousand miles away but kept in constant contact.  Her sister, who had nine (9) children of her own, not only took care of her kids but looked after her mother.  Her mother lived alone but they not only helped her themselves but chose what they felt was a good aide.  They never touched mom's money unless it was for mom.  Despite their good intentions, mom had the invariable problems that illness and aging bring.  There were minor injuries and a few ambulance calls.   A "helpful" friend thought that the aide was not providing good care and, rather than talking to the daughters, reported the case to the Area Agency on Aging.  The Agency visited and found nothing wrong.  They asked for an application to be signed so that the family could get "help."  The aide, who was quickly losing the ability and skill to keep up with mom's condition was let go.   Mom was admitted to a respite facility to enable the daughters to find another caregiver. 

Mom never wanted to go to a nursing home.  Her daughters promised her that she wouldn't.  They were doing their best to keep their promise.  Mom's attorney and friend couldn't intervene due to his own age and retirement.  The respite social worker was asking questions.  How did this happen?   Did you supervise the caretaker?   Your mom is too thin?  Your mother shouldn't go home.  She should be in a nursing home.  If you don't cooperate, you could be liable.  They called me in desperation.   What can we do?  We have a Power of Attorney.  Can we take her home?   Are we in trouble?  Can we really be held liable for this? 

I gave them the advice that I often give - "believe it or not this all is pretty normal and we see it all the time."    They were aware that what they were doing was not an easy task but they were not aware of how common their problems were.   The care of an aging parent is difficult if not impossible.   There are plenty of people who will be there to second guess if something goes wrong.  I tell people that the kids or caregivers who come to my office always have good intentions.  Every one of them feels the need to explain that they don’t care about money.  They care about their parent.  They all are conflicted about intervening.  They want mom to have her dignity and her independence.  In many cases, they themselves are hampered and cannot see the reality of the situation.  They do not want to lose mom or dad or their family.  There is often a caregiver child living with mom or dad or near their home and there are often kids who move away.   I tell them about my own mother and my own sister and how difficult it was not to be nearby and the price I still pay for not being there.  I still have conflicts about it. 

When I was in college we watched the play "The Price" by Arthur Miller in Family Psychology class.   The play had a significant impact on me since my own father had recently died.   The play is about two brothers coming together to clean up their father’s home after his death.  One brother was a caretaker who stayed at home.  He was a policeman and struggled financially.  He cared for his father but felt he had missed some opportunities that he might have taken if not for his commitment to his father.  The other brother left home early, attended medical school and became a successful doctor and owner of several nursing homes.  One lost the opportunity to be in his father’s life.   The other lost his independence and the ability to claim his professional and financial goals.   Both paid a price for their choices and both were conflicted about it.

I tell this story to my caretaker clients to help them to try and unite and work together for the care of a loved one.   Whether you stay or go, you are to a certain extent, built and ultimately perhaps, limited by your particular role in your family.  I remind our caretakers that this may be the most difficult family event they will ever face.  I tell them that it is faced by almost all families.  If I am speaking to the one who stayed, I tell them not to assume that a sibling who is far away does not care.   I tell them about our experiences with caretakers who are far from home.  We see conflict and guilt and therefore a certain level of defensiveness about discussions about care.   A casual question from an interviewer from Department of Aging becomes an accusation.   An innocent application becomes an admission of failure.   I tell them that this is normal, it happens all the time.  And money, this is the most volatile of topics.  I sometimes joke that I am going to hang a sign in my office that says "I know you are not doing it for the money."  That is how “normal” it is to have these conflicts.  I told my new client with the thin mother that what she and her sister were doing was not only appropriate but bordering on heroic.  It is easy to focus on the failings and ignore the accomplishments.  It is hard to intervene in a parent’s life without feeling that you are imposing.   And most time the parent fights intervention because they themselves are afraid of admitting defeat.  Although, once they do they usually relax greatly and do better because they don’t have to “fake-it” anymore.

There is no road map, but the children who take the time to seek our counsel are showing that they are working to understand what is needed and what is proper.  The kids who abuse their parents and run off with their money never come to our office.   We have seen hundreds of families.  We have seen many in tough circumstances and look to help them with perspective by telling them what other families have done.  We often know when a course of action will actually hurt rather than help a situation.  I often tell our new clients that they can relax.  That is what I told the sisters.  You are doing the right thing.   It is not easy.  Don't be too defensive.  Work together.  Keep communication open.   Let everyone know what is happening.  Surprises are not good.  There will be problems. You will be questioned.  You know your mom and you are trying to do what is best for her.   It’s normal, relax.   It's the price we pay for being in a family.

Nursing home coverage for veterans is available from two sources within the Department of Veterans Affairs — the veterans health care system and the state veterans homes system.

Nursing Home Coverage through the VA Health Care System
Nursing home coverage along with other long term care services such as home care and assisted living as well as geriatric care management are available through the Veterans Health Administration for qualifying veterans.

In order to get into the veterans health care program, the veteran must have service-connected disabilities, or be below a qualifying income level or be receiving Veterans Pension income. Once in the system, veterans are not guaranteed long term care services, including nursing home care, unless they meet specific requirements. Here is a list of these requirements for nursing home coverage.

Who is Eligible for Nursing Home Care

• Any veteran who has a service-connected disability rating of 70 percent or more;
• A veteran who is rated 60 percent service-connected and is unemployable or has an official rating of "permanent and total disabled;"
• A veteran with combined disability ratings of 70 percent or more;
• A veteran whose service-connected disability is clinically determined to require nursing home care;
• Nonservice-connected veterans and those officially referred to as "zero percent, noncompensable, service-connected" veterans who require nursing home care for any nonservice-connected disability and who meet income and asset criteria; or
• If space and resources are available, other veterans on a case-by-case basis with priority given to service-connected veterans and those who need care for post-acute rehabilitation, respite, hospice, geriatric evaluation and management, or spinal cord injury.

VA's nursing home health system programs include VA-operated nursing home care units and contract community nursing homes. Many VA hospitals operate nursing home care units located in or near the hospital. Other hospitals, without adequate nursing home beds, contract with approximately 2,500 community private nursing homes nationwide to provide services.

State Veterans Homes
State veterans homes fill an important need for veterans with low income and veterans who desire to spend their last years with "comrades" from former active-duty. The predominant service offered is nursing home care. VA nursing homes must be licensed for their particular state and conform with skilled or intermediate nursing services offered in private sector nursing homes in that state. State homes may also offer assisted living or domiciliary care which is a form of supported independent living.

Every state has at least one veterans home and some states like Oklahoma have a number of them. There is great demand for the services of these homes, but lack of federal and state funding has created a backlog of well over 130 homes that are waiting to be built.

Unlike private sector nursing homes where the family can walk in the front door and possibly that same day make arrangements for a bed for their loved one, state veterans homes have an application process that could take a number of weeks or months. Many state homes have waiting lists especially for their Alzheimer's long term care units.

No facilities are entirely free to any veteran with an income. The veteran must pay his or her share of the cost. In some states the veterans contribution rates are set at a certain level and if there's not enough income the family may have to make up the difference. Federal legislation, effective 2007, also allows the federal government to substantially subsidize the cost of veterans with service-connected disabilities in state veterans homes.

State Veterans Homes Per Diem Program
The Veterans Administration pays the state veterans homes an annually adjusted rate per day for each veteran in the home. This is called the per diem. The 2008 nursing per diem amount is $74.42 and for domiciliary care it is $34.40. Adult Day Health Care – up to one-half of the cost of care — cannot exceed $66.82 per day. The goal of state veterans homes is to get Congress to increase the per diem rate for nursing care to 75% of the state private nursing rates. In most states the per diem falls well short of this goal.

The per diem program and construction subsidies mean that State veterans homes can charge less money for their services than private facilities. Some states have a set rate, as an example $1,400 a month, and they may also be relying on qualified veterans receiving the Pension benefit with aid and attendance plus the per diem to cover their actual costs. Other states may charge a percentage of the veteran's income but be relying on other subsidies to cover the rest of the cost. Some state homes can receive Medicaid support as well.

Most of the states with income-determined rates are selective about the veterans they accept. These states may rely on a variety of private and public sources to help fund the cost of care.

Eligibility and Application Requirements for State Veterans Homes
From state to state, facilities vary in their rules for eligible veterans. And even in the same state it is common, where there is more than one state home, for some homes to have very stringent eligibility rules and others to be more lenient. These differing rules are probably based on the demand for care and the available beds in that particular geographic area.

Some homes require the veteran to be totally disabled and unable to earn an income. Some evaluate on the basis of medical need or age. Some evaluate entirely on income — meaning applicants above a certain level will not be accepted. Some accept only former active-duty veterans, while others accept all who were in the military whether active duty or reserve. Still others accept only veterans who served during a period of war. Some homes accept the spouses or surviving spouses of veterans and some will accept the parents of veterans but restrict that to the parents of veterans who died while in service (Goldstar parents).

Federal regulations allow that 25% of the bed occupants at any one time may be veteran-related family members, i.e., spouses, surviving spouses, and/or gold star parents who are not entitled to payment of VA aid. When a State Home accepts grant assistance for a construction project, 75% of the bed occupants at the facility must be veterans.

Domicile residency requirements vary from state to state. The most stringent seems to be a three-year prior residency in the state whereas other homes may only require 90 days of residency.

All states require an application process to get into a home. Typically a committee or board will approve or disapprove each application. Many states have waiting lists for available beds.

A current contact list of all state veterans homes is available at http://www.longtermcarelink.net/ref_state_veterans_va_nursing_homes.htm

Advantages and Disadvantages of Prepaid Plans
One way to plan in advance for the end of one's life is to sign a formal contract called a "pre-need funeral plan." With this plan, money to pay for a funeral and/or burial is held in a trust, in an escrow account or paid through an insurance policy on the life of the person desiring the plan. Parts of or all of the funeral service and burial are designed in advance and pre-funded in advance and the family has little to do but show up.

This type of planning has become very popular in recent years. A survey conducted by the AARP in 1999, found that two out of five people overage 50 had been approached to pre-purchase funerals and burial goods and services. An AARP survey in 1998 indicates that 32% of all Americans over age 50, roughly 21 million people, have prepaid some or all of their funeral and or burial expenses (but not necessarily through a formal pre-need plan). Breaking that down; about 25% of the over age 50 population have prepaid for their burials (cemetery plot,mausoleum or niche), 18% have prepaid for headstones, urns, caskets ,grave liners or vaults, opening and closing of graves and so on and 13%have prepaid for goods or services from a funeral home or funeral director. The same survey indicates that over $25 billion is being held in preneed trust funds. Roughly another $25 billion is waiting to be paid out in life insurance benefits. Prepaid or preneed funerals and burials are big business.

Funerals and burials funded privately by the family, or paid from an individual life insurance policy and arranged informally through a funeral home or funeral director are generally not subject to state regulation. Any formal arrangement through a second party or involving a contract is subject to regulation in all states. Each state has adopted different rules as to who can sell these plans, what the plans can provide, what contract provisions must be, how the plan is to be funded and what recourse purchasers might have in the event of fraud or default. All states call these regulated plans "pre-need" funeral and burial arrangements.

Here are some advantages as to why one would want to buy a preneed plan for funeral and burial services and goods.

• It provides peace of mind knowing these arrangements have been made in advance.
• It avoids the burden on family members to make decisions when they are most vulnerable to manipulation.
• It allows one to virtually control from the grave by determining in advance the funeral products, funeral services, burial products and burial services that one would prefer having for final arrangements.
• It helps the family to avoid taking loans, arranging finance plans,raiding savings or selling assets to pay for a funeral and burial.
• It guarantees (for many contracts) that if products and services currently purchased are not available in the future, equivalent substitutes will be provided at no additional cost.
• It locks in guaranteed prices (available with some contracts) forever.
• It allows for inflation in future costs (for those contracts that do not guarantee prices) by investing money in an interest-bearing account or buying life insurance that increases in value over time.
• Depending on the contract, it may allow for transfer to another funeral home or for partial or full refund.

Unfortunately, there are also problems with prepaid, preplanned final arrangements.

• With some trust fund and insurance funding options there may be no refund if someone wants to cancel the plan in the future.
• If a purchaser moves to another state there may be no transfer options or there may be different rules governing the funding option.
• In some contracts, interest earnings on investments resulting in excess money not needed for the plan may be retained by the funeral home or funeral director.
• On installment plans interest may be charged but not credited to the account.
• In certain insurance funded contracts, the ownership or death benefit may be irrevocably assigned to the contract holder (funeral home),preventing the purchaser from enjoying ownership rights in the policy.
• In certain insurance funded contracts, a growth in the death benefit over time that exceeds the cost of the preneed plan services and goods may be pocketed by the contract holder (funeral home) instead of being refunded.
• If the contract provider goes out of business or fails to secure 100%of the funds for future payment, there may be no recourse to get all of the money back that was put in.
• If certain services or goods that were purchased initially are not available in the future, but more expensive versions might be, the family may be forced to pay extra for those items.
• In certain insurance funded plans, if the insured dies too soon, there may have been a waiting period in which few or no benefits are paid at death, thus forcing the family to pay out of pocket for the funeral.
• Certain unscrupulous providers may have failed to provide an itemized list of services and goods or failed to identify properly, specific services and goods, thus allowing the provider in the future to substitute less expensive items or to leave out services and goods that were originally anticipated in the agreement.

What Services and Goods Can Be Prepaid?
All states allow for prepaid plans for funeral services and merchandise. This would include such things as picking up the body,embalming and restoration, rooms or chapel for viewing and funeral services, casket, vault or grave liner, transportation, permits, death certificates, obituaries and so forth. Almost all states allow for prepaid burial services and merchandise as well. Only about six states do not allow it. Burial services and merchandise might include opening and closing the grave, grave markers, vaults or grave liners,mausoleums or niches. Cemetery plots are excluded from prepaid plans in all states.

The AARP has excellent information for consumers on planning for funerals. Quoting from the AARP:

"Most states have a licensing board that regulates the funeral industry. You may contact the board in your state for information or help. If you want additional information about making funeral arrangements and the options available, you may want to contact interested business,professional and consumer groups."