An educational newsletter for those caring for the seriously ill
April 16 is National Healthcare Decisions Day. But as a family caregiver, you make important health-related decisions every day. Here is information that can help. Pass it on!
- If you are selected to be "power of attorney for health care"
- Putting yourself in positive perspective
- What does "generic" really mean?
- About Us
If you are selected to be "power of attorney for health care"
National Healthcare Decisions Day, April 16, encourages all adults to complete an advance directive. This document names a "power of attorney for health care," sometimes called a "proxy." The proxy is authorized to make medical decisions should a patient become unable to speak or think independently.
Being chosen to act as someone's health care proxy is a role of honor and responsibility. If your relative has selected you, consider these tips.
Prepare for the role
- Talk with your relative. Face to face, ideally. Ask how he or she would like to live the last chapter of life. Clarify spiritual or religious preferences. Talk about wishes and fears. For example, some people want to die at home. Others fear that would be a burden to family.
- Discuss crisis issues. Learn your loved one's priorities. Talk specifics. What life-support measures are desired? Which are not? Is there a condition or situation your relative feels would be worse than death?
- Keep the original document. Make sure you've got the advance directive your loved one signed, not a copy. Keep it where you'll be able to find it quickly.
When a crisis occurs
- Make yourself known. Introduce yourself to the medical team.
- Learn the facts. What is the diagnosis? What tests have been done? What are the treatment options? What are the risks and benefits? Side effects? What are the realistic outcomes? Consider what your relative would want.
- Get involved. Observe your relative's condition. Take notes. Prepare questions ahead of time for precious minutes with the doctor.
- Focus on the patient's best interest. You may wish to call a family meeting. But in the end, you must do as your loved one would have wanted, even if others disagree. A social worker, chaplain, or geriatric care manager can help facilitate a meeting and provide support.
Our article on health care planning provides additional tips.(Return to top)
Putting yourself in positive perspective
Caring for an ailing relative can shift life in a way that makes typical measures of "success" pretty useless. Perhaps it's no longer important to work such "top producer" hours. Or to have the best garden on the block. But without these familiar markers, you may wonder, "Who am I? How am I doing?"
Here's an opportunity for a personal check-in with feedback about measures likely to be meaningful to your life today. The Brief Strengths Test focuses on core character traits (those aspects of yourself that you draw on every day while caring for your loved one).
This is no New Age hoopla. The test was developed in the lab of internationally respected psychologist Martin Seligman at the University of Pennsylvania. It is offered online at no charge.
The test has you rank how frequently in the past month you have demonstrated 24 universally valued qualities. The result is a "profile" that highlights and affirms your strengths. Instead of focusing on achievements, this test recognizes actions such as
- "speaking up for what is right even if there is opposition" (bravery)
- "not seeking the spotlight" (humility)
- "taking responsibility for one's feelings and actions" (integrity)
- "persisting in a course of action in spite of obstacles" (persistence)
- "not saying or doing things that might later be regretted" (prudence)
- "being aware of the motives and feelings of other people" (social intelligence)
- "working well as a member of a group" (teamwork)
This is the test to take on a day you're feeling down or have had it with criticism! Post your current profile on the refrigerator. Perhaps set a goal for yourself to enhance a strength or two. Then retest occasionally to see how you're doing. Above all, delight in the positives of who you are! They are an important part of an accurate picture.(Return to top)
What does "generic" really mean?
This year many popular brand-name drugs will become available in generic form. Are they as good?
The Food and Drug Administration approves both brand-name and generic drugs. The two medicines are identical in
- active ingredient(s), strength, quality, safety, and how they work;
- required lab testing to prove they are absorbed 80% - 125% as well as the original (the average tends to be 96% - 104%);
- manufacturing standards that ensure consistency and purity.
Brand-name and generic drugs are different in
- inactive ingredients, such as colors, fillers, binders, and flavorings;
- appearance, such as shape, size, and color;
- clinical testing on humans, which is not required for generics;
- name, because the generic's is scientific instead of created for advertising.
The biggest difference is cost. Generic drugs cost about one-third as much as their brand-name equals. For instance, $50 instead of $150.
Why are brand-name drugs so expensive? It takes a lot of money and time to develop a new drug. In particular, it must be tested to show it works and is safe for humans. Patent laws give an innovator company 10 to 20 years to sell the drug with no competition. When the patent expires, any company can develop the generic equivalent. It is less expensive because they don't have to repeat the testing.
Is there a downside to generics? Not generally. Some consumers in online forums write that the generic has not worked as well. Others mention more or different side effects. But there is no scientific evidence or study to explain or support these personal reports.
Always talk with your doctor or pharmacist before making a drug switch.
If no generic is available, you may still be able to save on drug costs by
• checking with other stores for a better price or a senior discount;
• buying in bulk or through a mail-order company.
Since 1981, the Saint Barnabas Hospice and Palliative Care Center has provided vital support to patients and families in the management of symptoms related to advanced heart disease, cancer, Alzheimer’s disease, renal failure, ALS, AIDS, lung diseases and other conditions, allowing them to live according to their wishes, with dignity and comfort. A team of skilled, compassionate professionals provide care to patients at home, in long-term care and assisted living facilities, and at each of three hospital inpatient units located at Monmouth Medical Center, in Monmouth, Newark Beth Israel Medical Center, in Newark, and Community Medical Center, in Toms River.
We offer education and support through this e-newsletter, as well as our community education website at www.seriousillness.org/northjersey. There you can find information on medical concerns, emotional spiritual issues, and important decisions.
Learn more about us and about our services, by visiting our website, or call 973-322-4800.
Please Note: Barnabas Health Hospice and Palliative Care Center does not specifically endorse the activities of any organizations mentioned here, but offers their information as a sample of the kinds of materials and services that are available.