On Our Own Terms: Moyers on Dying - Dying: A Financial Guide

Dr. Joanne Lynn

If we were to imagine a very good care system, it would be reliable, competent, trustworthy, respectful, and affordable. What we have, instead, is a care system that is erratic, inattentive, anxiety provoking, and costly. Most American middle-class families are only one serious illness away from poverty. Most poor families simply must do without care unless Medicare or Medicaid covers it.

What can a patient and family do?

First, if you are still healthy, you can often protect yourself and your family with health insurance (including supplements to Medicare), savings, strategies to protect assets, and long term care insurance.

Second, keep family ties strong all during your life. Usually without payment, family members give much of the home care a seriously ill person might need. Care from family members is often more acceptable to the ill person than care by strangers since family members love and know the patient.

Third, learn about the costs you and your family are likely to face. This can be difficult. Costs vary and often they have not been described in useful ways. Furthermore, you may find the costs hard to believe. For many patients, the total costs for a final illness will equal a few years' income. Medicare or health insurance covers about half of costs, and the rest falls to family. Care for patients who need to live in an institution may be more costly. You often need to know how poor a person must be to qualify for Medicaid in your state, and what services Medicaid will cover.

Fourth, seek out available services. Of those who are eligible and would benefit, only a minority uses most of their community's services. Often, your local Agency on Aging keeps a list of services and eligibility requirements.

Fifth, consider hospice as soon as you might be eligible. Hospice services are unusually comprehensive and reliable, covering even home health aides and medications. Hospice also ensures attention to the family and to the spirit, two aspects of your life that other services often overlook. Depending upon how well you do, you may once again become "too healthy" for hospice. Most hospice coverage requires that the patient keep "dwindling" to stay covered. However, it is not a problem to go into and out of hospice - use it when you can, and leave when you are doing better, if your illness permits. Note: You should check your insurance policy carefully for hospice coverage, Medicare, however, will cover many Hospice programs.

Sixth, when you need home care, seek out companies that emphasize teaching patient and family how to handle things themselves. You or a family member will often have to cope "on your own," and having some training greatly reduces fear and anxiety.

Seventh, get advice from a lawyer who focuses upon "eldercare law" and/or from someone who knows your local care system such as a "care manager." These experts are often available to people in need through publicly supported senior centers or Legal Services offices.

Eighth, consider whether you have some assets that you could use-- reverse mortgages on your home, viatical settlements on your life insurance, conversion of stocks or trusts, and so forth.

Ninth, be realistic about what benefits will come from recommended treatments. Often, professional advice makes patients and families feel guilty if they turn down recommendations. Sometimes, a treatment or test that seems obligatory when the patient is hospitalized seems much less important when the patient is at home. Pay attention to how emotions like regret and a family's guilt can color your belief in the treatments presented, and make sure that any interventions proposed are what serve the patient best now

Tenth, plan ahead for probable calamities, like collapsing or getting frightening symptoms. This will avoid having to treat those problems as emergencies. Using emergency services frequently displaces control from the patient to the medial professionals, and if the services are not covered by insurance, can lead to large bills in only a few hours.

Eleventh, recognize that your frustrations with costs and quality are not just your problem. They are built right into the care system and its reimbursement patterns. The problems you face are not just your own, they are political issues, too.

Twelfth, consider plans for after your death. Many patients and families now pre-plan any memorial service, decide whether to use cremation or burial, and prepay for the services. After the death, the family feels such pressure to decide things quickly that they can end up spending much more than anyone wanted. The pressure of making arrangements can also hinder the family's grieving process.

Living with a fatal illness is very likely to run up substantial bills. There is only so much that you, or anyone can do, but planning ahead, being thoughtful about expenses, and getting good advice can help.

Adapted from Lynn and Harrold, "The Handbook for Mortals." Oxford Univ. Press, 1999.

Dr. Joanne Lynn is the Director of the RAND Center to Improve Care for the Dying in Arlington, VA. She is also the President of Americans for Better Care of the Dying and has written two books on end-of-life care: "The Handbook for Mortals: Guidance for People facing Serious Illness" and "Improving Care at the End of Life: A Sourcebook for Managers and Clinicians."