Respect at the End of Life

Do you sense a theme here?

This topic is one that I have thought about often and researched, and I have some very specific and personal thoughts, which I feel compelled to share.  There is certainly a legal component, but also deep and philisophical aspects.

As part of a complete estate plan, clients will execute a Heath Care Proxy. This document appoints an agent who is authorized to make health care decisions in the event of incapacity of the principal.  

The Health Care Proxy, however, is limited in that it focuses strictly on medical care, but not on other wishes you may have regarding your care as you near the end of life.   It is just as important that your agent and others close to you understand your wishes with respect non-medical matters.    It is crucial to have meaningful discussions with those on whose behalf you will be making decisions.  There are many decisions to be made that go beyond an understanding of strictly medical matters.

Just as important as the medical care is an understanding of what the patient wants toward the end of life.    While the patient is still mentally competent, ask the patient:  What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? What are your priorities beyond merely being safe and living longer?  And what is the course of action that best serves this understanding?

These questions, and the  responses to them,  help the agent and the family understand the wishes of the patient separate and apart from the strictly medical realm.  When does a patient cross the line from quality of life, to no quality of life?  If quality of life exists, the patient may wish to continue treatment in order to maintain that quality.   Quality of life means something different to each indivudual.  Of course, the severity of the treatment must also be considered—will the treatment be so invasive or painful that quality of life is compromised?   The decision is different for everyone, and it is crucial to understand not only what medical procedures are to be withheld or provided, but also to understand the patient’s fears, hopes and goals as they progress to the end of life. 

Ultimately, everyone hopes for a good death, a death with dignity.  Understanding the patient’s philosophies, fears, hopes, goals, and how to implement those, will guide the agent and the family when faced with making some very difficult choices. It is not only about medical interventions, but also about the decisions one must make in respecting the wishes of the patient.  It is about death with dignity, however defined for each individual.

Ethical Wills

A typical estate plan includes, among other documents, a Health Care Proxy which guides the appointed agent in making decisions about end of life care. This document, however, is strictly legal in nature and does not allow the principal to express any other thoughts and wishes. 

Many who take the steps to establish an estate plan ruminate over how to communicate matters  important to them other than those strictly financial.  This may be done by an Ethical Will.

Unlike a "living will" or "last will and testament," an Ethical Will isn't a legally binding document. It could be a letter—ranging from half a page to a bound book—or a video recording, addressed to those parties with whom you wish to share it. There are no rules governing what goes into it, or when the contents should be shared with the heirs, but the idea behind it is simple: Convey values, not valuables.

Ethical Wills are becoming more common as a way to express non-legal thoughts. It is a letter or document in which you can set out other things that are or have been important to you during your life.

The Ethical Will is written for the benefit of the heirs, but the process can be very cathartic for the author as well.  The author has the opportunity to reflect on his life in ways he might otherwise never do.

Ethical Wills may take many forms.  One verson might be more formal, and include any or all of the following items, or any others not listed here with are important to you:

Your history, past and present.

            Your earliest memories and childhood.

            Your teenage years.

            College years.

            Early Adult years.

            Marriage.

            Children.

            Grandchildren.

Work

Travel

Your later years

Personal Values and beliefs

            At different points of your life, and why?

            What values resonate with you?

            What values are most important to you?

            Who taught you these values?

            What values do you wish to see in others around you?

            What values do you wish to leave to others?

Your hopes for the future

            Hopes and dreams for loved ones

            Family traditions to be continued

            How to help others     

            How to do good in the world?

            How to make a difference?

            How to find peace

Life lessons and achievements

Growth from losses and failures

Achievements and accomplishments

Gratitude:  what are you thankful for, and why?

Advice to your family and friends

Personal values and beliefs

Any closing thoughts

Another version may be more informal, and simply be an enumeration of things you would want others to remember about you.

In simplest form, an Ethical Will talks about quality of life issues, what constitutes a “good death”, and when that good death should be allowed to happen.  It provides guidance to your Health Care Agent which, in the context of a grave or terminal condition, expresses at what point you feel your quality of life would be so compromised, or non-existent, so that you wish further treatment to be discontinued.   In making such decisions, you might discuss with your doctor, and/or your loved ones, what fears you have, what your priorities are,

Ultimately, it can be whatever you choose it to be.  It may provide history, thoughts, feelings and hopes about your life and those you hold dear.  is a gift to your loved ones.

End of Life Care: Part Three

I have written twice previously about the important topic of discussing the subject of end of life care with aging seniors, a significant concern for those approaching the end of life and and those who care for and love them.  The discussion of this subject has, apparently, "gone viral", and this is a positive thing.  The topic that previously we rarely heard about in the context of estate planning, medicine and other relevant places is now everywhere.  Why the sudden global interest?  Whatever the case, the issue is being discussed in many different contexts.  Things are changing for the better. 

Seniors age 65 and older are entitled to Medicare coverage, which provides health care insurance to the older population during the last years of life.  And as I have discussed, in addition to strictly medical concerns, several other factors contribute to an assessment of whether patients are getting the care they want or need as they approach the end of their lives.  In many cases, the wishes of those patients are unmet.

To the credit of the Centers for Medicare and Medicaid Services, as of 2016, Medicare will begin covering advanced care planning, including discussions between physicians and other health care professionals and their patients regarding end-of-life care and patient preferences.  

I am encouraged that the populations of seniors approaching the end of life are finally being afforded the consideration and respect they have long deserved but not always received.

We all die.  Wouldn't it be nice if we could all express our philosophies and our wishes in a meaningful way, and be heard, so we can die with dignity, just as we have lived?

It's Time To Have That Talk

As parents age, many families still have difficulty discussing end of life care.  Adult children don't like to think of their parents as mortal, and if they refuse to have the discussion, maybe mom or dad will never die.   Unfortunately, this is not true.  Perhaps the adult children feel that such a discussion is unnecessary.  Perhaps they are just too busy to find the time.  But many adult children become caregivers for their elderly parents, either physically, by having mom or dad move in with them, or administratively, by ensuring that mom and dad get the needed care elsewhere, such as in assisted living, or home with a caregiver.  It is very important for adult children to sit down with mom and dad and discuss a couple of things.  One is end-of-life care in the event of a terminal illness-- what medical interventions would they want, and not want, as they see the end of their life?  For this, a Health Care Proxy is an invaluable tool on which the adult children can rely for guidance, but it is no substitute for the conversation.  The other major topic is burial and funeral wishes.  Some wish to be buried in a plot, others wish to be cremated.  Some would like a funeral or memorial service, others do not.  Some would like visiting hours or shiva, others would prefer to skip those things.  By having the discussion with elderly parents ahead of time, when mom or dad passes away, the children will not have to guess what to do, especially at such an emotional time.  Most funeral homes offer advance arrangements, such as identifying a burial plot and discussing the type of services that will be needed.  This is difficult stuff, and losing a parent might be one of the greatest emotional challenges an adult child will ever face, but it is a gift you can give both to your parents and to yourself if you are armed with this information in advance. 

Estate Planning for the Childless

According to an August 2013 report from AARP, 11.6 percent of women ages 80 to 84 were childless in 2010. By 2030, the number will reach 16 percent. By 2010, the caregiver support ratio was more than seven potential caregivers for every person over 80 years old. By 2030, that ratio is projected to decline to four to one. By 2050, it’s expected to fall to three to one.  Children usually provide about 70 percent of long-term care.  But for those without children, alternate plans must be made.  The following article from the New York Times discusses those alternates.  http://www.nytimes.com/2014/02/15/your-money/the-childless-plan-for-their-fading-days.html?smid=fb-share.

Estate Planning in the Digital Age

Since the beginning of time, estate planning in some form has existed as even our biblical ancestors thought out which assets to leave to which individuals.  In recent times, planning has primarily involved the transfer of real estate, financial assets and personal property by will or trust.  As we have entered this new digital age, however, it behooves us to consider not only our tangible assets, but also our digital assets.

To begin with, most people these days keep information about assets in digital form.  Each of these accounts will be password protected, so the Personal Representative (PR) of the estate must have the passwords in order to access these accounts.  For this reason, the principal should keep a list not only of what assets they own, but also of the passwords for any and all accounts or assets that are accessed in digital form.  This list must, of course be kept in a safe place such as a jointly owned safe deposit box, a password protected document, or other secure location.

In addition to online information about assets, many people are now opting to receive bills only in online form and not by paper and mail.  This can result in bills not being paid if the PR is unaware of those bills, possibly accruing substantial late fees and interest or even having utilities shut off.  For that reason, it is also important that the principal maintain a list of all paperless bills, and passwords for each, so that the PR can be sure to pay any liabilities of the decedent without adverse effect. 

Further, some digital assets may have monetary value, such as online photos taken by a photographer, writings of an author, and the like.  It is suggested that the owner of such assets hold title in the name of a revocable trust to avoid the issue of probating the digital assets, which can be challenging.

Finally, there is the issue of social media.   Facebook, Twitter, LinkedIn or other accounts may continue life long after the person is deceased.    The PR should have the passwords to those accounts as well, so that they may be terminated once the owner is deceased or at some appropriate time thereafter.

So the message here is important.  Just as you should maintain a list of all tangible assets so that the PR may best administer your estate, so should you keep a list of all digital assets, accounts and other such items, with passwords, so that the PR will be able to locate and access all such assets and accounts for the most orderly management of your estate.

Get Your Affairs In Order

I recently heard a story from a couple in their 80's that struck me as interesting.  Though in relatively good health, they each have their maladies and one has started to develop some more serious health issues.  They recounted that in a recent visit to their primary care physician, in addition to the medical exam, the physician initiated a conversation with them about end-of-life issues.  "You are nearer to the end than to the beginning", said the physician.  "Do you have all of your affairs in order, including estate planning, burial wishes and arrangements and the like?"  I was taken somewhat aback, but quite pleased,  by this story, as it had not occurred to me that this was advice that would come from a physician.  I was happy to hear that the physician was advising the couple on how to prepare for their end not only in a medical context but in an overall life context.  I commend this physician on doing so and hope this is a common practice in geriatric medicine.

As I have often said, particularly to elderly clients, putting your affairs in order, having a complete estate plan, and sharing your wishes for end-of-life care with your loved ones are all immense gifts you can give to them.   As children and grandchildren must mourn the loss and adjust to life without their loved one, it is an additional burden to have to go on a treasure hunt to gather information about the estate of the deceased and deal with a disorganized probate process to transfer assets.  It is also imperative for parents of minor children to establish guardianships and a method of managing assets for the benefit of the children while they are young.  For this reason, I highly recommend that everyone, regardless of age, take the time and effort to establish an estate plan that will allow for the orderly administration of an estate in the event of a loss.   Life is precious but fleeting, and one never knows when it might be taken, whether expected or otherwise.  I specialize in compassionate,  comprehensive and competent assistance with these matters.  Make it your new year's resolution to call me and take care of this work in 2014.

Professional Wills

Often, my estate planning clients are engaged in a professional practice of some sort, be it law, medicine, psychiatric care, accounting or the like, and many are sole or principal practitioners.  The customary documents most often do not provide any specific instructions for the winding up or disposition of the professional practice.  As such, in addition to the standard Will, Trust, Durable Power of Attorney and Health Care Proxy, it may be wise for such a client to execute a “Professional Will” addressing the winding up and disposition of the professional practice.  Some professions have regulations addressing file retention, client notification and other such matters, and it is important that a qualified person be in charge of seeing the process through in full compliance with all applicable matters.

A Professional Will differs from a personal Will, in that it is not a legal document, but rather a detailed set of instructions for an appointed “Professional Executor” to follow.  The Professional Executor (“PE”) generally would not be the person named as Personal Representative or Trustee of the other documents, but rather a professional colleague who understands the nature of the practice and the steps to be taken.

The PE should be empowered to do any or all of the following:

1.         Identify all of the clients to be contacted to inform them of the death or incapacity of the professional.  This may be done in person, by phone, or in writing, but should be done with proper sensitivity.

2.         Access all records relating to the practice, and as referred to below.

3.         Change voice mail message, website and any other internet-based sites relating to the professional.

4.         Notify any professional liability insurance carrier of the death or incapacity of the professional, and deal as needed with current or future coverage.

5.         Refer current client matters to other practitioners or to him/her self.

6.         Return files to clients, if they request that, or otherwise dispose of closed client files in a responsible manner (shredding, burning) to maintain confidentiality.

7.         Inform all professional organizations of the death or incapacity, and terminate memberships.

8.         Maintain all other files in compliance with any applicable laws, rule and regulations.

9.         Reconcile all financial records, pay liabilities and collect receivables.

A Professional Will should include:

1.         A list of all of the clients to be contacted to inform them of the death or incapacity of the professional, and a statement empowering the PE to contact those clients.

2.         A statement identifying where all current client files are kept.

3.         A statement identifying where all old files are kept.

4.         Identifying the location of all billing and financial records relating to the practice, including passwords if they are kept on a computer.

5.         A statement identifying the location of all databases of client names, addresses and phone numbers, with passwords if applicable.

6.         A list of all email addresses, websites, and other on-line resources used by the professional and passwords for all.

7.         Location of any keys required to unlock file cabinets or other storage facilities.

8.         Any specific information to be provided to clients.

9.         If applicable, the name and contact information for the professional liability insurance carrier, and any other professional organizations to which the decedent may belong.

10.       Arrangements, if any, for compensation to the PE for the work he or she does.

11.       Any additional instructions to the PE.

If you have already had an estate plan prepared, you may want to consider adding a Professional Will to the document set.  If you have no estate plan, now would be an excellent time to put one into place, and a Professional Will may be a part of such a plan.  It behooves you to leave proper information and instructions in the hands of a trusted person who is qualified to attend to the difficult task of winding up a professional practice in an appropriate manner.

Asset Protection and MassHealth Qualification

My older generation of estate planning clients often ask how to protect assets from being spent down on long term care in the event the client becomes ill and needs to enter a nursing home.  Many clients want to protect the assets they have worked so hard to generate over their lifetimes and do not want to end up spending all assets on care for the last chapter of their lives.  This question triggers a discussion of “Medicaid Planning”, which is a way to protect assets so as to qualify the client for governmental benefits in the event he or she must enter a nursing home.  The governmental benefit in question, formerly known as Medicaid, is now called “MassHealth”.

As the population ages and the government’s burden increases, it has become increasingly more difficult to qualify for MassHealth, and the regulations are being modified regularly to limit eligibility. MassHealth qualification mandates that an applicant have not more than $2,000 in “countable assets”, and limits income as well.  Clients who have in excess of $2,000 in assets will often ask about “giving away” their assets (usually by transferring them to their children) in order to qualify.  Unfortunately, the days of simply taking everything out of mom’s name are gone.

When applying for benefits, you must disclose all assets including any transferred away within the preceding five years.  Certain assets are considered “non-countable”, but MassHealth will “look back” at all asset transfers during the five years prior to the date of application, and if the applicant has transferred any countable assets for less than fair market value during this five year period, he or she will become ineligible for MassHealth benefits for a period of time which is related to the value of the assets transferred.  Important to note is that the disqualification period runs not from the date of transfer, but rather from the date when the individual enters a nursing home and is “otherwise eligible” for MassHealth coverage. In other words, the penalty period does not even begin until the individual applies for benefits. 

Some feel that planning for MassHealth best requires planning ahead by transferring assets at least five years in advance of the time when a nursing home is likely to be needed.  Of course, it is impossible to predict the future, so even the best planning may be thwarted by an unexpected illness.  MassHealth planning necessarily requires that the individual give up all elements of ownership and control over otherwise countable assets, which is something that many clients are not comfortable doing, especially while still relatively young and healthy.  The client must weigh the relative benefits of planning for MassHealth qualification against the risks of giving up all control and ownership of assets at a time that may be premature.  Fortunately, there are steps an individual may take even at the last moment to protect at least some assets from being accessed to pay for nursing home care. 

Because of the difficulties described above, LONG TERM CARE INSURANCE has become a very popular and well-advised product.  A long term care policy may provide necessary funds to cover not only nursing home expenses, but many other in-home and community-based medical services as well.  (MassHealth benefits will only pay for residential, institutional care.) The different options for long term care insurance are beyond the scope of this article, but if you are age 50 or older and concerned about paying for medical care as you age, investigating and procuring long term care insurance may be a worthwhile endeavor.