Hospice Isn't About Giving Up

Written By:  Geriatric Planning Specialist Amy G. Bailey, RN, MSW

  Many times when people hear the word "hospice," they shiver and change the subject.  Hospice is scary, hospice means it's "all over", that death is near.  It's easier not to talk about it, and pretend it doesn't exist.   But consider that death is just as important as birth.

We talk about a birth, plan for it, discuss the process, wonder about the outcome.  By talking about it, by facing it, we integrate it into our lives.  We show respect for a birth, and make a welcome place for the beginnings of life.  What if we gave the same time, discussion and respect to the end of life?  Perhaps we would be less fearful.

All our lives we talk about things we mean to do, and things that are important to us.  Somehow, we don't get around to them.  We don't take that trip to the Rockies , we don't visit Aunt Sue one more time, we don't heal the anger between brothers.   And then we are out of time, and there are regrets.  Regrets are bitter.

Sometimes, we have a warning that our time is limited- that is often the case in the diagnosis of terminal illness.  What a terribly frightening thing to hear!  The response of fear is not so much a fear of death itself, as a fear of how you will die, perhaps in pain, or alone, or without the forgiveness of an estranged friend, without having your affairs in order.

Second, there may be decisions to make about future treatments - will you try for a remission or cure, or is it time to consider comfort and symptom management.  

Then, to make things worse, people start to treat you differently.  They avoid eye contact.  They don't stay long when they visit, or they don't visit at all.  That adds to the loneliness and sense of isolation.  Many people would like to be of support, but do not know how.  They may be feeling vulnerable and frightened themselves.  That leaves you, and your loved ones feeling even more alone. 

There is help.  Consider Hospice, not when death is imminent, but when you learn that you or a loved one has a life limiting illness of any kind.  The services of Hospice are not JUST for the last few days of life, they are for the entire end-of-life process. 

Hospice can answer questions about your illness, and help you understand what to expect.  They can help you understand the things you need to consider as you make decisions about treatment options.   It is not necessary to wait until your doctor calls Hospice - you can call Hospice.  They will contact and work with your doctor, to provide the care that you need.

Hospice is expert at pain and symptom management. "With appropriate symptom management, it is frequently possible to do more, to enjoy daily activities."  To someone who can take that trip they have put off for years, or go to a grandchild's christening, or attend a family picnic, "quality of life" is more than a phrase. "And that's the kind of thing we want to do for people." (Barb Watts-Huebert, MSSA Susquehanna Home Care/Hospice.)

Hospice can help you face the frightening issues.  The nurses, social workers, pastoral care counselors, aides, and volunteers have all had special training to make it easier for you to talk about end of life issues, to face and complete unfinished business.  Many hospice patients report that they are more comfortable with their lives, better able to enjoy friends, family, and activities.  "Hospice is not what people think it is, it's not scary at all.  It's help, because I couldn't keep mom at home without their help.  Instead of sitting around a bed at a nursing home, we can have family visits and birthdays at home."  (Debra K. Smith, daughter of a Hospice patient)

Hospice also provides support to family and friends.  Sometimes a patient has come to acceptance and the family has not.  This can create tension and misunderstanding at a time when mutual support is needed.  Hospice can assist family members come to terms with the patient's choices, and provide support after the death. 

Dame Cecily Saunders, founder of the Hospice movement, recognized that dying is hard.  It is difficult to leave loved ones, cherished places, and vital interests.  It is also a mistake to romanticize the dying process and hope that by admission to Hospice, everything will be wonderful and there will be no grief.  But it is possible for you to accept that death is as inevitable as birth and that it is a natural part of life.  That acceptance puts aside fear and anger, allows healthy, open grieving, and gives you and your loved ones the freedom to enjoy each other, to grieve and grow together, and to find peace. 

If you or your loved one is facing a life threatening illness, please call your local Hospice.  Hospice is not about giving up; it's about going on.

For more information, please see http://www.nhpco.org and http://www.hospicenet.org,or your local Hospice. 

Thanks to Barb Watts-Huebert, MSSA, Social Worker at Susquehanna Homecare and Hospice, and to Debra K. Smith, daughter of a Hospice patient, for their contributions to this article.  Other resources include The American Journal of Nursing, Nursing, and RN.

Study Shows Failure of Living Will as Planning Tool

Written By: Jeffrey A. Marshall, CELA*

An "advance directive" is a set of instructions that says how you want medical decisions to be made if you ever lose the ability to make those decisions for yourself.  The most popular form of advance directive is the "living will." Unfortunately, both consumers and health care providers often fail to appreciate the significant limitations of living wills.

Living Wills and Health Care Powers of Attorney

A living will describes the kinds of treatment that an individual wants to receive if the individual is terminally ill or permanently unconscious AND not competent to make medical decisions.  A living will is not relevant unless the patient is either terminally ill or permanently unconscious. 

The professional staff at Marshall and Associates has long recommended that our clients have health care powers of attorney in addition to, or in lieu of, living wills so that decision making is authorized for the broad spectrum of health related issues that are likely to arise if the client becomes incapacitated. By using a health care power of attorney, the client can authorize a trusted family member or friend to make health care decisions if client is ever unable to do so. Instructions regarding the client's philosophy as to end-of-life care and other situations that may arise can be included in the document. The agent can act regardless of whether the principal is terminally ill or permanently unconscious. 

The health care power of attorney is valid whenever the client is not competent to give informed consent. It creates an advocate for the client who can evaluate the facts and apply the client's philosophy to whatever situation has arisen.  It allows for substituted but truly "informed" consent to treatment. The health care power of attorney should be the advance directive planning tool of choice for most people. 

Study Highlights Inadequacy of Living Wills

Recently, a study by researchers at the University of Michigan highlights another reason why people need health care powers of attorney: living wills don't work.  In an article to be published in the next issue of The Hastings Center Report, a bioethics journal, an internal medicine researcher and a professor of law and internal medicine find that living wills are inadequate. The researchers base their conclusions on their review of hundreds of studies of living wills, end-of-life decisions, and the psychology of making choices.

"Our review shows that the evidence about living wills demonstrates that they fail all five tests that would have to be passed for them to work," says study co-author Angela Fagerlin, Ph.D. "First, most people don't even have living wills. Second, those who do rarely know what care they would truly want in some hypothetical future. Third, it's surprisingly hard for people to state their wishes accurately and understandably. Fourth, the document is often unavailable when decisions need to be made. Fifth, even when it is available, surrogate decision makers usually cannot reliably apply its instructions to the patient's current health condition."

As advances occur in modern medicine and peoples' situations change, their preferences about medical treatment change as well.  Living wills do not allow the flexibility to deal with those changes.  Living wills require that you make black and white decisions in a world that is usually not so simple.

People are not Clairvoyant

Co-author Carl Schneider, a University of Michigan Law School and Medical School professor comments, "Living wills don't fail for lack of effort, education, intelligence, or good will. They fail because of basic traits of human psychology." People have great trouble predicting their own preferences about even simple, everyday things, like what snacks they will want or what groceries they will buy next week. "If they have trouble predicting what is familiar," asks Schneider, "why should we expect them to succeed when they are predicting what they will want in circumstances they have never experienced and can't foretell?"

The researchers suggest that people will have a better chance to avoid undesired medical treatment if they use a health care power of attorney to appoint someone to make decisions for them if they are unable to make their own.  Powers of attorney "only require a few simple choices, and they don't differ significantly from the existing system of allowing family members to make medical decisions about incompetent patients," says Schneider. "They also allow the decision-maker to use the information about the patient's condition that's available at the time a decision is needed, rather than asking the patient to guess about something far in the future."

Researchers Recommend Health Care Powers of Attorney

The University of Michigan researchers suggest that the health care power of attorney is the tool most people should use to help ensure that their wishes will be carried out.  The power of attorney allows people to make simple decisions based on things and people that they know, without having to guess about the future. Unlike living wills, powers of attorney may provide a process for making any health care decision that arises, not just those that involve terminal illness.  Health care powers of attorney are effective.  Living wills are not. 

Helpful links:

The Hastings Center Report website: http://www.thehastingscenter.org/.

University of Michigan 's full press release on the study's findings: http://www.med.umich.edu/opm/newspage/2004/livingwills.htm.

More information about Advance Directives from The Elder Law Firm of Marshall, Parker & Associates':

http://www.paelderlaw.com/factsheet.html.

http://www.paelderlaw.com/legaltools.html.

 Does Your Club Or Organization Need A Speaker?

If you are interested in having an attorney or geriatric planning specialist from

The Elder Law Firm of Marshall, Parker & Associates' speak to your group, or at an upcoming event, please contact

our Public Ed ucation Coordinator,  Melissa Bottorf

at mbottorf@paelderlaw.com or 1-800-401-4552

Elder Law Attorneys: Zealous Advocates

The following article was reprinted with permission from Eye on Elder Issues, a newsletter provided as a public service by the National Academy of Elder Law Attorneys (NAELA).

  Elder law attorneys are zealous advocates for people of age and those with disabilities. When clients seek the advice of an elder law attorney, it is not usually for just a single issue. Health care decisions, long term care financing decisions, or end of life decisions often involve complicated legal, medical, and social issues that affect the individual seeking assistance, as well as their families. The legal concerns of this population can tear at the heart as people grapple with major life-changing decisions.

Many of our nation's seniors are facing debilitating diseases, as they grow older than the generations before them. Alzheimer's, Parkinson's disease, Lupus, and even Fibromyalgia and Osteoporosis can be devastating to those with limited financial means and family support. They wonder how they will care for themselves, where they will live, how to avoid outliving their money, and what rights they have under existing health care insurance plans, Medicaid and Medicare programs.

Our nation's laws are fragmented and confusing, at best. Our federal benefit programs (Social Security, Medicare, Medicaid, Veteran's Benefits, etc.) are under constant change and new financing products come on the market daily. This vulnerable population often has no one to help them sort through the issues in a logical and personal way and are often subject to unscrupulous salespeople selling products that do not really meet their needs.

There are a myriad of housing options available: from assisted living to nursing home care to group homes. There are several financial vehicles being offered: home equity loans or reverse mortgages, credit cards or debit cards, loans and viatical settlements; and a variety of insurance programs: from health insurance to disability insurance to long-term care insurance. There is also a range of family situations that must be taken into account: providing for disabled children, frail spouses, or the support of parents. The reality is: it takes an elder law attorney to sort through the issues in light of the individual's personal situation and what may be confronting him/her in the future.

One of the newest products to come out in the last few years is long-term care insurance. Many insurance agents have marketed this product as the best way to finance long term care. As with any product, the evaluation needs to be done with the individual's circumstances in mind. This particular product provides a perfect example of the value that the elder law attorney brings to the client. If the client has a pre-existing condition, this type of insurance is often not available or may be too expensive to purchase. The elder law attorney will explore long-term care insurance as an option and then offer other viable alternatives that may fit the client's situation better. It is the elder law attorney's legal and ethical obligation to explore all possibilities available to the client. This may be applying for unused benefits, using untapped resources, or doing Medicaid planning. The main focus is to allow the senior to live out their lives comfortably with as much dignity as possible and the peace of mind that their loved ones will not be burdened by their circumstances.

Elder law attorneys are working with our nation's seniors on a daily basis. They are in a position to see the deficiencies of our federal benefit programs, to identify products that fit specific needs and to work with families to meet the needs of their loved ones. Our nation owes our elders the opportunity to live and die with dignity. Elder law attorneys bring concern, care, and compassion to vulnerable individuals who are often in very delicate and complicated situations.

For more information about elder law attorneys and the National Academy of Elder Law Attorneys, visit http://www.naela.org/. Established in 1987, NAELA provides a resource of information, education, networking and assistance to those who deal with the many specialized issues involved with legal services to the elderly and people with special needs.  

 "Paying for Long-Term Care: What Families Need to Know" Workshop Set for Wilkes-Barre

  Getting good information about options for long term care is critically important for seniors. Four out of every ten people reaching age 65 will spend some time in a nursing home and many more will require home care and assistance with daily living.

The Elder Law Firm of Marshall, Parker & Associates' is known throughout Pennsylvania for the expert help we provide seniors who are faced with long term care needs. We help families struggling to care for their loved one at home find the programs and financial help they need.  Our help can mean the difference between staying at home and moving to a nursing home.

If nursing home placement becomes necessary, we work with the facility to help make the transition go as smoothly as possible. We make certain that the nursing facility gets paid in a timely manner while helping the family qualify for government programs that help pay the costs. 

Marshall, Parker & Associates' occasionally holds free workshops to help educate families and their advisors about the options that are available to pay for long term care in the home or a nursing home.  Join us for one of these free presentations and learn what you need to know about how to get the help you need and protect your family's financial security when your spouse or parent is faced with a long term illness.             

Each presentation is FREE and open to seniors, their families, elder care professionals, and anyone else who needs to learn more about this complex subject.  Each presentation lasts about 1 ½ hours, including a "Question & Answer" Session.  

  - Thursday, June 10^th, 2004 at 6:30 PM

Woodlands Inn and Resort

1073 Highway 315, Wilkes-Barre  

  Reservations are suggested, but not required.  SIGN UP ONLINE or call 1-800-401-4552 for more information or to reserve your spot for this free workshop.  Or just stop by!

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*Attorney Marshall is certified as an Elder Law Attorney by the National Elder Law Foundation under authorization from the Pennsylvania Supreme Court

 

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