Did you miss our April 10 online chat about end of life care hosted by Jennie Chin Hansen, CEO of the American Geriatrics Society and former AARP president? If so, a transcript of the discussion follows.
Comment from Pam: My dad asked me to be his durable power of attorney. What exactly is that?
Jennie Chin Hansen: A durable power of attorney for health care (DPAHC) identifies the individual you want to make treatment decisions on your behalf if you’re unable to make these decisions yourself. This individual — known as a “surrogate” or “advocate”— is usually a relative or close friend.
Before you prepare a DPAHC, you should make sure he or she is willing to make such decisions on your behalf. You should specify the type of medical care you do and do not want. Also, if you want your advocate to be able to refuse care needed to keep you alive, you must put this in writing in your DPAHC.
Comment from Lance: Hi Jennie, great to have you on! Advanced Directives: each state seems to have their own rules, but there are offerings out there that claim to provide templates that would be accepted in all 50 states. Should they be trusted?
Jennie Chin Hansen: Lance, you are right. Each state has its own rules. One way to check is to go to the American Bar Association's national website, which has collaborated with the American Medical Association and AARP who have looked at the best way to communicate and use tools from a national and state by state perspective.
Comment from Rachel: My brother is dying. We never had the conversation about his wishes and now we really need to know. How do we even bring it up with him? This is really hard but I know it is necessary.
Jennie Chin Hansen: Rachel, this has to be very hard for you and your family. One thought is to acknowledge how important it is to have his thoughts and wishes expressed. He is probably thinking a great deal about them but may need an opening from you to talk with him.
Comment from Alicia: My doctor has not mentioned anything to me or my sister about what my mother needs to prepare for the end of her life. She is terminally ill and her doctor keeps wanting to do tests and other treatments to prolong her life. How do we get him to understand this?
Jennie Chin Hansen: One of the simplest yet often under-utilized tools is the art and act of listening to learn what a patient wants. Teaching health care professionals how to listen and how to be comfortable complying with a patient’s wishes is an essential component of allowing people to die according to their wishes.
We need to be sensitive to perceptions, many of them culturally based, that can impede open discussions between health care professionals, patients and families, and to address these issues as part of health care professionals’ training in end-of-life care.
Comment from Lynn: Do I need a lawyer to sign my advance directive?
Jennie Chin Hansen: No. There are accepted preprinted forms that you will need a witness but it doesn't need to be a lawyer.
Comment from Jim: I want my funeral to be more of a party instead of some quiet, somber event. Is this OK and what would be a good way to enable this?
Jennie Chin Hansen: Sure! How we want to be remembered is very important. Make sure whoever you designate to do your final arrangements/celebration has that in writing.
Comment from Karen: Is the U.S. the only country that seems to “shy away” from talking about the end of life? What do other countries do?
Jennie Chin Hansen: In 2010, the Lien Foundation of Singapore devised a “quality of death” index, similar to the “quality of life” index used to rate living conditions in various countries.
Using the “quality of death” index, a study of 40 countries showed that those with long-standing hospice and palliative care programs ranked the highest, with the United Kingdom (UK) being first, followed by Australia and New Zealand.
The U.K. has made “quality of death” an important public policy issue, something that many developed and developing countries have yet to do.
Comment from Erica: Wills, Powers of Attorney, Medical powers of attorney, it's all confusing. What is the best/easiest way to start?
A third resource is the American Geriatrics Society — a public education website with an entire section dedicated to End-of-Life Care and Advance Directives.
Comment from Kevin: What is the difference between a living will and a durable power of attorney?
Jennie Chin Hansen: Advance directive is a general term used to describe living wills and medical powers of attorney.
Living Wills, sometimes called medical directives, outline the type of care an individual wants in the event that they can no longer make their own medical decisions.
Advance directives only cover health decisions. It does not cover financial decisions.
Comment from Nicki: I’m researching nursing home facilities for my father-in-law. My husband and I have heard good and bad things. We are quite nervous about making the right decision. What should we be aware of before choosing a place?
Jennie Chin Hansen: When touring a prospective nursing home, ask to see the nursing home’s license. Also ask if they are Medicare and/or Medicaid certified.
You should also find out what services they offer. For example, does the place provide wound management for seniors who develop bedsores, physical rehabilitation services, or a specialized unit for those suffering from Alzheimer’s disease or other forms of dementia?
Comment from Barbara: At 65 should I be planning things for myself? I only have one child and no other close family? I have MS and I have refused care to date. I am still independent.
Jennie Chin Hansen: Yes. It's important that your values and wishes are known to your child so that how you want care provided when you find it acceptable is important to be explained in your voice. It is never too early to do that.
Comment from Guest: Hi, Jennie, it's Lisa. I"m so glad to see you as our Guest. Quality of Life is so important. I find the phrase Quality of Death helpful. How could we use this phrase more often in the U.S.?
Jennie Chin Hansen: Lisa, this a great suggestion.
Singapore has devised a quality of death index so that this phrase has now surfaced.
Most important is that we develop comfort and ease of talking about this more openly.
One good resource is the Conversation Project, which makes this a kitchen table discussion.
Comment from Carma: I work full time and have small children at home to care for. On top of that, I am now caring for my great aunt. It is overwhelming to say the least!
Jennie Chin Hansen: I understand what you’re going through, Carma. And so do 42 million Americans who like you, care for older parents, grandparents, spouses and other older loved ones. While caring for an older family member can be one of the most rewarding experiences of a lifetime, it can also be stressful.
Comment from Molly: Do you have any tips for preparing an advance directive?
Jennie Chin Hansen: I sure do!
First, talk to your relatives, friends and health care providers.
Explain your wishes so your family, friends and providers are prepared to carry out your wishes without any doubt or confusion. It’s a good idea to make multiple copies of your advance directive and distribute them to your doctors, local hospital and family members. A copy of your advance directive should be a part of your medical record.
Second, it is important to remember that you review and revise your advance directive as needed. Advance directives do not expire. Over time, you may change your mind about what kinds of treatment you would, and wouldn’t, want. If you do, you should revise your advance directive and give your friends, family, and health care providers a copy of the new version.
Comment from Christa: What are some signs that a nursing home is really prepared to care for their residents? I want to make sure the place where my grandmother is living is safe, supportive, and clean.
Jennie Chin Hansen: Here are some questions to ask yourself, or to keep in mind when you visit your grandmother:
1. Are there handrails in the bathing areas and hallways?
2. Does the nursing home accommodate special dietary needs by, for example, preparing pureed foods, and carefully monitoring meals for residents with diabetes and food allergies?
3. How many staffers are working at a given time during different shifts? And are there policies stipulating minimum staffing levels for specified numbers of residents?
4. Are the bed rails or guard rails on nursing home beds raised up? Raised guard rails on beds pose a serious injury risk for older adults, and should rarely be used to restrain patients. Likewise, residents sitting in chairs should not be restrained with seat belts or trays.
You could also visit the nursing station to monitor your grandmother’s daily activities — which staff should record in her medical chart.
You can also ask to review the services provided by the staff and inquire about any changes in medications, diet, behavior, sleep or exercise. Good luck!
Comment from Jordan: When should I call in Hospice to care for my loved one?
Jennie Chin Hansen: If you are wondering about Hospice, now would probably be a good time to learn more about the program.
Many people don't take advantage of the program and service until much later when the benefits of this degree of support and care could be realized earlier.
Technically speaking, Hospice is geared for the last six months of a person's life.
This program would be a wonderful support to you.
Comment from Guest: Do different cultures handle end of life differently? I am African American and we definitely don't talk about this in our families. How do I even bring up the conversation?
Jennie Chin Hansen: Yes. There are significant cultural differences but for every family there are opportunities to reflect on friends or loved ones who die and to reflect on their death. This opens an opportunity to talk about what is important.
Nearly every culture wants to have the person not suffer. This is a way to talk about palliative support.
Comment from Bob: In my experience with my mother it was improtant to have BOTH a living will and a DPAH. During one ER visit at 2 a.m. she needed to be intubated but her living will said no. I has DPAH and the ER doc said whe could survive if he intubated; otherwise, she would die. He knew her well, so I trusted his advice. She was off the ventilator 10 hours later and lived another three years.
Jennie Chin Hansen: Hi, Bob. Your comments point out that it is important to have formal tools just as you've described.
But ever so important is the fact that your loved one's needs are understood and well known.
So the judgement of her doctor in this case clearly lead to a happy outcome.
Comment from Jessica: Lately, I have been really tired, cranky and can’t seem to stop crying. I have been taking care of both of my parents for over a year now. Maybe it’s catching up to me. What can I do to feel better?
Jennie Chin Hansen: It sounds like you might be experiencing caregiver burnout. You are not alone.
Caregiving can be a full-time job and it can take a lot out of you. It is important to get help before caregiving becomes overwhelming.
1. Talking about your experiences and feelings in person or online can make caregiving less stressful. Some people find it helpful to join a caregiver support group.
2. Learn about the person’s health conditions now and what the condition may look like over time, and how their conditions may change in the future.
3. Since part of the stress is managing many medications, please look to the American Geriatrics Society medications list (PDF)
4. Take care of yourself! Eating well, exercising, and taking time to relax and enjoy yourself are key to avoiding burnout.
If you take care of yourself you’ll be able to take better care of others. Also know the warning signs of depression and get help when you need it.
If you visit the AARP Caregiving Resource Center, you will not only find resources to help you but you will also find a place to chat with other caregivers like yourself.
The AGS Foundation for Health in Aging also has some great suggestions. Make sure to check out the tip sheets listed under “Caregiver Resources.”
Comment from Jennifer: What are some important things family caregivers should be aware of at the end of life?
Jennie Chin Hansen: 1. Respecting the wishes of your loved one;
2. Make the remaining days, weeks or months for the person you care for meaningful;
3. Take care of yourself. Many caregivers don’t realize how much of a toll it can take on themselves to care for someone else.
AARP: I think that will be our last question for the day.
We'd to thank Jennie for her great answers and you, our audience for your great questions.
Jennie Chin Hansen: Thanks for having me. We appreciate your interesting in this subject. We didn't have a chance to cover everything but stay stuned to www.aarp.org/caregiving for more.
AARP: A replay of this chat will be available shortly.
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