How to Get Good Hospice Care: Hard-Won Advice from the Pennsylvania Nurse Prosecuted for Aiding Her Father’s Death

Barbara Mancini, RN, MSN

In February 2013, Barbara Mancini was arrested in Pottsville, Pennsylvania, and charged with aiding the attempted suicide of her dying 93-year-old father, Joseph Yourshaw. Ms. Mancini, a registered nurse in Philadelphia, had handed him his prescribed morphine at his request. After Mr. Yourshaw took the morphine, his hospice nurse called 911. The hospice nurse and the police ignored Mr. Yourshaw’s written advance directives about the kind of care he wanted at the end of his life, and he was hospitalized and treated in defiance of his wishes.  He died at a hospital four days later.

Ms. Mancini’s prosecution lasted a year, during which the case garnered national attention and was roundly criticized in the media. The charges against Ms. Mancini were finally dismissed when a judge ruled that there was insufficient evidence to send the case to jurors.

In the years since, Ms. Mancini has become a vocal advocate for improved end-of-life care.  She believes that one of the main reasons for the ordeal that her father had to endure in his final days was the failure of his hospice provider to deliver the care he was entitled to.

In a podcast conversation with ElderLawAnswers, Ms. Mancini explains how families can advocate for good hospice care for their loved ones and avoid the nightmare that she and her father endured. As she says in the podcast, “My biggest regret is that I didn’t do more to research hospice care. . . . Hospice is a vital end-of-life care option. The problem is that hospices vary greatly in the quality of care that they provide.”

Medicare’s hospice benefit covers any care that is reasonable and necessary for easing the course of a terminal illness. Among the crucial requirements hospices must follow are that a patient has a right to receive effective pain management and symptom control, and that the hospice must provide care that optimizes comfort and dignity, with the patient’s needs and goals as the top priority.

Many people are satisfied with their hospice care. But information has come to light of problems with some hospice providers. The U.S. Department of Health and Human Services Office of Inspector General (OIG) issued a disturbing 41-page report in 2018, finding that hospices do not always provide needed services to beneficiaries and sometimes provide poor quality care. A more recent OIG report highlights hospice deficiencies that pose risks to Medicare beneficiaries.

These revelations underline the importance of carefully selecting a hospice provider. Ms. Mancini suggests asking for recommendations from friends and family members as well as professionals. But she also strongly advises doing your own research to make sure that you are picking the right provider, and she offers a list of questions to ask when interviewing a hospice:

  • Is staff available 24 hours a day, 7 days a week?
  • How do you ensure that patients obtain their desired level of comfort?
  • Who will direct the hospice patient’s care?
  • What education is provided for the patient and caregivers?
  • Will you ever override a patient’s advance directive? Under what circumstances?
  • How many patient and caregiver complaints were received in the last year? How were they resolved?
  • How many patients and caregivers have terminated services? What are the reasons?
  • Is the hospice concerned about opiate addiction in its patients? (“If the answer is yes, run, don’t walk, away from that hospice,” Ms. Mancini counsels.)

The best end-of-life care is based on the individual patient’s values and wishes. For this reason, Ms. Mancini stresses the importance of advance directives, so the patient’s wishes are in writing. She also believes in the importance of individuals being well-informed about the rights of the patient and the responsibilities of hospice providers.

To listen to the full podcast episode, click here.  This is Part 2 of a two-part interview with Ms. Mancini.  For Part 1, in which Ms. Mancini recounts the events that led to her prosecution for her father’s death, click here.

For more on hospice care, click here and here.

For more on end-of-life decision making, click here.

 

Tips on Creating an Estate Plan that Benefits a Child with Special Needs

Parents want their children to be taken care of after they die. But children with disabilities have increased financial and care needs, so ensuring their long-term welfare can be tricky. Proper planning by parents is necessary to benefit the child with a disability, including an adult child, as well as assist any siblings who may be left with the caretaking responsibility.

Special Needs Trusts
The best and most comprehensive option to protect a loved one is to set up a special needs trust (also called a supplemental needs trust). These trusts allow beneficiaries to receive inheritances, gifts, lawsuit settlements, or other funds and yet not lose their eligibility for certain government programs, such as Medicaid and Supplemental Security Income (SSI). The trusts are drafted so that the funds will not be considered to belong to the beneficiaries in determining their eligibility for public benefits.

There are three main types of special needs trusts:

  • A first-party trust is designed to hold a beneficiary’s own assets. While the beneficiary is living, the funds in the trust are used for the beneficiary’s benefit, and when the beneficiary dies, any assets remaining in the trust are used to reimburse the government for the cost of medical care. These trusts are especially useful for beneficiaries who are receiving Medicaid, SSI or other needs-based benefits and come into large amounts of money, because the trust allows the beneficiaries to retain their benefits while still being able to use their own funds when necessary.
  • The third-party special needs trust is most often used by parents and other family members to assist a person with special needs. These trusts can hold any kind of asset imaginable belonging to the family member or other individual, including a house, stocks and bonds, and other types of investments. The third-party trust functions like a first-party special needs trust in that the assets held in the trust do not affect a beneficiary’s access to benefits and the funds can be used to pay for the beneficiary’s supplemental needs beyond those covered by government benefits. But a third-party special needs trust does not contain the “payback” provision found in first-party trusts. This means that when the beneficiary with special needs dies, any funds remaining in the trust can pass to other family members, or to charity, without having to be used to reimburse the government.
  • A pooled trust is an alternative to the first-party special needs trust.  Essentially, a charity sets up these trusts that allow beneficiaries to pool their resources with those of other trust beneficiaries for investment purposes, while still maintaining separate accounts for each beneficiary’s needs. When the beneficiary dies, the funds remaining in the account reimburse the government for care, but a portion also goes towards the non-profit organization responsible for managing the trust.

Life Insurance
Not everyone has a large chunk of money that can be left to a special needs trust, so life insurance can be an essential tool. If you’ve established a special needs trust, a life insurance policy can pay directly into it, and it does not have to go through probate or be subject to estate tax. Be sure to review the beneficiary designation to make sure it names the trust, not the child. You should make sure you have enough insurance to pay for your child’s care long after you are gone. Without proper funding, the burden of care may fall on siblings or other family members. Using a life insurance policy will also guarantee future funding for the trust while keeping the parents’ estate intact for other family members. When looking for life insurance, consider a second-to-die policy. This type of policy only pays out after the second parent dies, and it has the benefit of lower premiums than regular life insurance policies.

ABLE Account
An Achieving a Better Life Experience (ABLE) account allows people with disabilities who became disabled before they turned 26 to set aside up to $15,000 a year in tax-free savings accounts without affecting their eligibility for government benefits. This money can come from the individual with the disability or anyone else who may wish to give him money.

Created by Congress in 2014 and modeled on 529 savings plans for higher education, these accounts can be used to pay for qualifying expenses of the account beneficiary, such as the costs of treating the disability or for education, housing and health care, among other things. ABLE account programs have been rolling out on a state-by-state basis, but even if your state does not yet have its own program, many state programs allow out-of-state beneficiaries to open accounts. (For a directory of state programs, click here.)

Although it may be easy to set up an ABLE account, there are many hidden pitfalls associated with spending the funds in the accounts, both for the beneficiary and for her family members. In addition, ABLE accounts cannot hold more than $100,000 without jeopardizing government benefits like Medicaid and SSI. If there are funds remaining in an ABLE account upon the death of the account beneficiary, they must be first used to reimburse the government for Medicaid benefits received by the beneficiary, and then the remaining funds will have to pass through probate in order to be transferred to the beneficiary’s heirs.

Get Help With Your Plan
However you decide to provide for a child with special needs, proper planning is essential. Talk to your attorney to determine the best plan for your family. To find a directory of members of the Academy of Special Needs Planners, visit https://specialneedsanswers.com/USA-special-needs-planners.

Home Care Costs Rise Sharply in Annual Long-Term Care Cost Survey

When it comes to long-term care costs, the charges for home care are now rising faster than those for nursing home care, according to Genworth's 2019 Cost of Care survey. In the past year, the median annual cost for home health aides rose 4.55 percent to $52,624, while the median cost of a private nursing home room rose only 1.82 percent to $102,200.

Genworth reports that the median cost of a semi-private room in a nursing home is $90,155, up 0.96 percent from 2018, and the median cost of assisted living facilities rose 1.28 percent, to $4,051 a month. But home care services had sharper increases. The national median annual rate for the services of a home health aide rose from $22 to $23 an hour, and the cost of adult day care, which provides support services in a protective setting during part of the day, rose from $72 to $75 a day, up 4.17 percent annually.

Alaska continues to be the costliest state for nursing home care by far, with the median annual cost of a private nursing home room totaling $362,628. Oklahoma again was found to be the most affordable state, with a median annual cost of a private room of $67,525.

The 2019 survey, conducted by CareScout for the sixteenth straight year, was based on responses from more than 15,178 nursing homes, assisted living facilities, adult day health facilities and home care providers.  Survey respondents were contacted by phone during May and June 2019.

As the survey indicates, long-term care is growing ever more expensive. Contact your elder law attorney to learn how you can protect some or all of your family's assets from being swallowed up by these rising costs.

For more on Genworth’s 2019 Cost of Care Survey, including costs for your state, click here.

Will My Advance Directive Work in Another State?

Making sure your end-of-life wishes are followed no matter where you happen to be is important. If you move to a different state or split your time between one or more states, you should make sure your advance directive is valid in all the states you frequent.

An advance directive gives instructions on the kind of medical care you would like to receive should you become unable to express your wishes yourself, and it often designates someone to make medical decisions for you. Each state has its own laws setting forth requirements for valid advance directives and health care proxies. For example, some states require two witnesses, other states require one witness, and some states do not require a witness at all.

Most states have provisions accepting an advance care directive that was created in another state. But some states only accept advance care directives from states that have similar requirements and other states do not say anything about out-of-state directives. States can also differ on what the terms in an advance directive mean. For example, some states may require specific authorization for certain life-sustaining procedures such as feeding tubes while other states may allow blanket authorization for all procedures.

To find out if your document will work in all the states where you live, consult with an attorney in the state. 

 

How to Plan Your Funeral

Thinking about your funeral may not be fun, but planning ahead can be exceedingly helpful for your family. It both lets them know your wishes and assists them during a stressful time. The following are steps you can take to plan ahead:

  • Name who is in charge. The first step is to designate someone to make funeral arrangements for you. State Law dictates how that appointment is made. In some states, an informal note is enough. Other states require you to designate someone in a formal document, such as a health care power of attorney. If you do not designate someone, your spouse or children are usually given the task.
  • Put your preferences in writing. Write out detailed funeral preferences as well as the requested disposition of your remains. Would you rather be buried or cremated? Do you want a funeral or a memorial service? Where should the funeral or memorial be held? The document can also include information about who should be invited, what you want to wear, who should speak, what music should be played, and who should be pallbearers, among other information. The writing can be a separate document or part of a health care directive. It should not be included in your will because the will may not be opened until long after the funeral.
  • Shop around. It is possible to make arrangements with a funeral home ahead of time, so your family does not have to scramble to set things up while they are grieving. Prices among funeral homes can vary greatly, so it is a good idea to check with a few different ones before settling on the one you want. The Federal Trade Commission’s Funeral Rule requires all funeral homes to supply customers with a general price list that details prices for all possible goods or services. The rule also stipulates what kinds of misrepresentations are prohibited and explains what items consumers cannot be required to purchase, among other things.
  • Inform your family members. Make sure you tell your family members about your wishes and let them know where you have written them down.
  • Figure out how to pay for it. Funerals are expensive, so you need to think about how to pay for the one you want. You can pre-pay, but this is risky because the funds can be mismanaged or the funeral home could go out of business. Instead of paying ahead, you can set up a payable-on-death account with your bank. Make the person who will be handling your funeral arrangements the beneficiary (and make sure they know your plans). You will maintain control of your money while you are alive, but when you die it is available immediately, without having to go through probate. Another option is to purchase a life insurance policy that is specifically for funeral arrangements.

Taking the time to plan ahead will be a big help to your family and give you peace of mind.

For more information on planning your funeral  see http://www.michaelmillonig.com/practice-areas/funerals-burial/

Annual Mental Examination

An annual physical with a doctor is something most of us do. Especially as we get older or if we have a medical problem it is important to monitor our health. What about our mental health? Have you ever thought of having an annual mental checkup? Probably not. I suggest that you should consider this for legal reasons related to your estate planning.

Unfortunately, some family members or other friends often take advantage of an older person by exerting influence on them to change their will or “loan” them money. This is a very common form of elder abuse. If there is a will contest after the person dies or other legal action, a necessary piece of evidence will be proof of the person’s mental competency or lack thereof at the same time as the signing of the will or other elder abuse. This requires that a doctor perform one or more of the competency evaluation tests used by doctors. Many times this medical evidence is just not available. If you had done an annual mental checkup, you would already have this in your medical records. That proof will be essential in a successful will contest or other legal action against a person taking money from a vulnerable older person.

The annual mental checkup with the doctor might even result in suggested medications, treatment or other activities that might improve your mental health.

Estate Planning For Funerals and Burial

This is a consumer oriented seminar by Michael J. Millonig, Attorney At Law, Ohio State Bar Association Board Certified Estate Planning, Trust and Probate Specialist, Certified as an Elder Law Attorney by the National Elder Law Foundation . Time & Place: Friday October 11, 2019 from 1:00 PM to 2:30 PM. Please call Kathy Ferrante at Rec West Enrichment Center for reservations @ (937)432-2839

Illegal Refusal to return body for transport

There are some other laws that you need to be aware of if you are planning a home funeral. It is possible you might run into a problem with a funeral home, hospital or other official that may refuse to release custody of the body to you. If you are demanding custody of the body for transport, you must be the person holding the right of disposition under Ohio law. This person will be named in a written declaration signed by the decedent. If there is no written declaration, then Ohio law sets forth the persons who are vested with the right of disposition in order of priority. For more information see http://www.michaelmillonig.com/practice-areas/funerals-burial/

It is illegal under Ohio law for anyone to refuse to return custody of a corpse or cremated remains to the person legally entitled to it. This is prohibited under several sections of the Ohio Revised Code with possible penalties and criminal fines. See O.R.C. §4717.13(A)(11), O.R.C. §1713.40 & 1713.41.

Medicare Launches App to Help Beneficiaries Find Out What’s Covered

At the doctor’s office and want to know if a procedure is covered by Medicare? There is an app for that. Medicare has launched a free app that gives beneficiaries a quick way to see whether the program covers a specific medical item or service.

The “What’s Covered” app allows you to search or browse to learn what’s covered and not covered under Medicare Parts A and B, how and when to get covered benefits, basic cost information and other eligibility details. You can also see a list of covered preventive services.  The app does not give results for extra benefits that Medicare Advantage plans may cover but that Original Medicare does not, such as certain vision, hearing or dental benefits.

Examples of the types of questions the app can answer include:

  • When are mammograms covered?
  • Is home health care covered?
  • Will Medicare pay for diabetes supplies?
  • Can I get a regular cervical cancer screening?
  • Will my Medicare benefits cover a service to help me stop smoking?

Although the app provides beneficiaries with basic information, it doesn’t provide personalized information. It doesn’t ask details about each user’s specific insurance information, so it doesn’t take into account the user’s supplemental insurance, co-insurance, and deductibles. Essentially, the app provides another way for Medicare beneficiaries to get the same information that is available online and in the Medicare handbook.

The app is part of an initiative by the Centers for Medicare and Medicaid Services (CMS) focused on modernizing Medicare and empowering beneficiaries. Other initiatives include:

  • Enhanced interactive online decision support to help beneficiaries better understand and evaluate the coverage options and costs of original Medicare compared to Medicare Advantage plans.
  • New price transparency tools that let consumers compare the national average costs of certain procedures between settings, so people can see what they’ll pay for procedures done in a hospital outpatient department versus an ambulatory surgical center.
  • A new webchat option in the Medicare Plan Finder.
  • New easy-to-use surveys across Medicare.gov so consumers can tell CMS what they want.

To get the new “What’s Covered” app, go here: https://www.medicare.gov/blog/whats-covered-mobile-app.

Home Funerals under Ohio Law: Update

If you plan to hold a home funeral service without use of a funeral home, you have the right to do that under Ohio law. O.R.C. §4717.12. However, this will not be easy to do since the legal system and normal procedures are set up assuming use of funeral home. It will be difficult to obtain a death certificate, burial permit and transport the body without use of a funeral home. However, it can be done. This procedure is outlined below.

1. Ohio law provides that the funeral director or “other person in charge of final disposition” must register the death with the Bureau of Vital Statistics. Thus, you can obtain a death certificate without use of a funeral director. The death certificate form is issued and must be signed by the attending physician or coroner. O.R.C. §3705.16. If a funeral home is not registering the death, then you need to contact the Ohio Dept. of Health, Vital Statistics, in Columbus to get the death certificate. You cannot get the death certificate issued by the County department. Contact information for Columbus is: : VS.Registration@odh.ohio.gov 614-466-2531. You will need a written statement certifying the death from a licensed physician, coroner, or other licensed healthcare professional which you should request immediately.

2. You must call the County Coroner to report the death if the person died as a result of a crime, casualty, suicide, child under age 2, developmentally disabled person, or death in any suspicious or unusual manner. O.R.C. §313.12. If no funeral home is involved, it is probably best to call the Coroner or ask the hospital or nursing home to call the Coroner.

3. The body will need to be removed from the place where the person died. If they are in a hospital, there will be a refrigeration unit for temporary storage. Nursing homes generally do not have a refrigeration unit and you will need to arrange for transportation immediately. You could contact a funeral home to arrange for transportation and temporary storage in a refrigeration unit or embalming if desired. You might be able to use a transport service for transporting the body to a cemetery or crematory but will need to have a death certificate and burial or cremation certificate. In order to find a transport service other than a funeral home, try to find out who is used by the County for indigent persons or by an organization accepting direct body donations. You could perform an internet search for body transport or mortuary transport.

4. After obtaining the death certificate from the Columbus office, you then get the burial or cremation permit from the County Bureau of Vital Statistics. O.R.C. §3705.17 & O.R.C. §4717.22.

5. After all the above are completed, the next step is to make cemetery arrangements for burial or cremation. If you do not use any of the transport options in 3 above, you may want to transport the body by yourself. However, you should be careful since this is unusual. First, you must make sure that you have completed the above steps. The person with the “right of disposition” under Ohio law should be present during transport of the body. You can transport the body to the home or other place of funeral service or to the cemetery. Although there is no law prohibiting a private person transporting a body for this purpose, it is unusual and if you are stopped by the police, you should have a death certificate and burial/transport permit with you If you are transporting the body across State lines, you need to comply with the law of each State which might be different.

6. You can hold a funeral/memorial service at a community facility, family residence or a grave site/cemetery service. The right for a home funeral is preserved in Ohio law. O.R.C. §4717.12.

If you have any problems with the above procedure, please call me for assistance.