Who’s in Charge of Your Health Care?

by Jan Simpson  Who’s in charge of your health care? No one, according to Atul Gawande, M.D., who spoke at Harvard Medical School’s 2011 commencement. “Medicine’s complexity has exceeded our individual capabilities as doctors. It’s like no one is in charge, because no one is.” According to Dr. Gawande, as our knowledge about the human body has exploded (there are  more than 13,000 diagnoses, 6,000 prescription drugs, and 4,000 surgical procedures), patient care has suffered.

Consider the following statistics:

  • Two million patients pick up infections in hospitals in the U.S., mostly because of poor antiseptic precautions;
  • 40 percent of patients with coronary disease and 60 percent of patients with asthma receive incomplete or inappropriate care;
  • One-half of medical complications is avoidable.

These are frightening statistics, especially coming from Dr. Gawande, a gifted surgeon, author, and advocate for change in the way physicians practice medicine. According to Dr. Gawande, the source of this trouble is that physicians are trained and encouraged to work independently rather than in coordinated teams. He suggested that these newly graduating physicians cultivate the ability to work with colleagues like pit crews, rather than cowboys, for patients. Dr. Gawande’s full speech may be accessed here.

Forgive my cynicism for I love Dr. Gawande, the Justin Bieber of medicine. His words are always thought provoking as he challenges all within the health care system to improve patient care. Yet, I suspect that these young Harvard-trained physicians, sitting on mountains of student debt, likely envision futures as specialists or surgeons like Gawande himself, not working more anonymously as part of a “pit crew.” “Cowboys and Pit Crews” may sell magazines, but it will take time to change the way physicians deliver care.  Meanwhile, what’s a family with an ill parent or older loved one to do?

Intuitively, most of us know that the best way to care for our older loved ones is to have a relationship with one physician and minimize the time spent in the system, especially time spent in hospitals, where patients are vulnerable to infection, medical errors, or worse. Family physician and geriatrician, Dennis McCullough, M.D., who has practiced medicine for thirty years cautions, “Most geriatric doctors I know would not want their own parent in a hospital without a family member in attendance at all times.”

As a practical matter, sitting round the clock with a parent in the hospital isn’t possible. But, having spent a decade in the system with my own parents, I would like to share ten tips that can help you get the best possible care for your loved ones.

1.) Create a one-page medical fact sheet that includes a list of prescriptions, allergies, and contact information for next of kin. Leave a copy at the nurses’ station.

2.) Tell the nurses and the physicians which family member to contact with medical information. Assign one or two family members to be the conduit of all information, otherwise pieces of information may be lost if or when serious decisions need to be made. One of these members should be your loved one’s legal health care agent (see earlier blog post “Health Care Proxy & Five Wishes – at 18 and 81”). If your loved one hasn’t assigned an agent, ask the hospital for a form and complete it immediately.

3.) Spread family visits out throughout the day and evening. Try to have some family members visit around lunch and dinner time to ensure that your loved one is eating adequately.

4.) Unless your loved one has dietary restrictions, bring a frappe or Ensure to boost spirits and help keep him or her well-nourished. Do not assume that he or she is eating well.

5.) Keep a notebook on your loved one’s nightstand and ask family members to record information about each visit (e.g., Did Mom get her evening meds? What did Dad eat for dinner?). This is particularly important if your loved one is frail or may have memory lapses due to medication or illness.

6.) Bring a pound of coffee or a box of chocolates as a gift for the night nurses. Nothing is more appreciated by nurses than an acknowledgment of their help. Evenings are often when your loved one will be alone, and this gesture may ensure that he or she gets a bit of extra attention.

7.) If your elder is frail, post a one-page note about him or her and include a family photo from younger days. A young intern might find it interesting that the elder gentleman he or she is caring for was once a fighter pilot or a scratch golfer, and, as a result, may spend a bit more time with him.

8.) Remember that the average number of health care providers your loved one will see is nineteen, and much of the care will be uncoordinated. Do not hesitate to ask questions; reach out to the doctors in person, by telephone, or email. Be assertive but polite. Most health care providers appreciate family members who show authentic interest in helping a parent. Take notes in a medical diary so you can refer to them later.

9.) Make an appointment with the hospital social worker (in person or by telephone), even if your parent will be returning home. Ask about local caregiving resources, options for rehabilitation, etc. One of your best sources of information will be the social worker.

10.) Ask specifically about the timing for discharge and the kind of support that you will be getting. You don’t want to be surprised by an early morning call from a nurse saying your parent is being discharged and find your family unprepared to provide the home care that will be needed to support his or her recovery.

Above all, get your parent out of the hospital as soon as possible. With all respect to the many physicians, nurses, social workers and health care providers who work tirelessly to save lives and care for our loved ones, Dr. Gawande is wrong. There is someone in charge of the care of our loved ones: their family.

If you have any additional tips on how to manage hospital stays, I hope you will share them here.

©Circle of Life Partners™

 

 

In the Sandwich? Seven Favorite Sources of Information

by Jan Simpson

To keep informed, I read, tweet, meet experts, attend conferences, and talk with people who provide medical, legal, financial, housing, and home care services to families. I also spend time with entrepreneurs who are launching businesses to help seniors age in place safely.  Along the way, I’ve accumulated a list of favorite information sources.  Here are seven.

#1 Favorite Blog: The New Old Age: Caring and Coping (The York Times) provides timely stories and electronic links to resources. If your family is actively caring for an older loved one, this site is worth bookmarking. Click here.

#2 Favorite Physician Leader #1: Dr. Atul Gawande whom I call the Justin Bieber of medicine, is a surgeon, writer, and an advocate for change in the way hospitals deliver care. He is considered a thought-leader, someone to follow if you have an interest in peeking behind the quality problems in hospitals. Caution: you may never leave a loved one alone to navigate hospital care again. Read his latest article here.

#3 Favorite Physician Leader #2: Dr. Servan-Schreiber turned his own experience with brain cancer into a campaign to help others prevent cancer or a relapse. If you have an hour, listen to his story here. Dr. Servan-Schreiber has teamed up with the MD Anderson Cancer Center in Houston, Texas to finance scientific studies that will evaluate the benefits of specific foods and activities such as yoga on cancer care. Neither the government nor the pharmaceutical companies will fund this research, so he is asking for donations from individuals and foundations. Watch this short video to learn more.

#4 Favorite Foods/Spices for Healthy Aging: Blueberries, Celery, Parsley, Turmeric and more. Click here for a full list.

#5 Favorite Book about Health Care: Overtreated by Shannon Brownlee explains how Americans are being subjected to unnecessary medicine in many parts of the country.  After you read Overtreated, reflect on the advice of gerontologist Dr. McCullough (author of My Mother Your Mother)—embrace “slow medicine”— and you’ll know how to support older loved ones.

#6 Favorite Radio Network: I have found podcasts on the Aging Smart Radio Network helpful. Here is one about long-term care insurance. Click here.

#7 Favorite Way to Find Information: Twitter

If you’re not on twitter, check it out. It’s simple to use and easy to find tips, resources, news, and people on a myriad of topics. Or, just follow me at @colpartners and I’ll do the research for you.

Do you have any favorite information sources?

©Circle of Life Partners™

Summer Reading for A Cause

Dear Friends,

The Fourth of July weekend is a wonderful time to relax with family and friends by the shore, near the lake, or around the barbecue at home. To thank you for your support this year, I am offering a 20 percent discount for Don’t Give Up on Me! during the month of July. This discount is available only on purchases made through my blog, Don’t Give Up on Them.

 

As you may know, we donate all profits from book sales to innovative non-profit organizations that support elders or their adult care partners. Thus far, we have made donations to the Alzheimer’s Association, the Marino Center for Integrative Health, the Women’s Health Initiative at Brigham and Women’s Hospital, and the Memoir Project at Grub Street.  We have a long list of organizations that do outstanding work with elders and their families; it is our hope to support them as well.

My best wishes for a weekend filled with joy and laughter.

©Circle of Life Partners™

Health Care Proxy & Five Wishes – at 18 and 81

by Jan Simpson

Has your 18-year-old signed a health care proxy? Last week, I wrote about a durable power of attorney, one of two legal documents that help family members support an ailing parent or loved one. The second document is called a health care proxy or a health care power of attorney. While we often think about the importance of a health care agent for an older loved one, most parents are less aware of the need to have their 18-year-old assign them as their agent.

A health care proxy is a legal document that gives the person named, often a family member, the authority to make all health care decisions for a loved one if he or she is unable to express his or her wishes. I first learned about proxies when I accompanied my father to the hospital on the day of his lung surgery. When we arrived, as part of the admissions process, my father was given a clipboard of documents to sign. Although my dad and mother had written a will and were diligent about updating it periodically, they had never drafted a health care proxy. According to the clerk, the hospital would not perform surgery unless my dad legally designated a health care agent to make decisions on his behalf, if necessary.

Facing lung surgery with hope and optimism, the clerk’s words sliced though his unspoken confidence about a favorable outcome. A flash of fear crossed his face. “Jan,” he said signing the document and handing it to me, “don’t give up on me.” I took the form and recorded my mother’s name as the health care agent, with me as the alternate. “Don’t worry,” I replied, winking at the nurse while trying to restore his fighting spirit, “you’re the cat with nine lives and this is only number seven.” He laughed and relaxed noticeably.

My dad had thirty seconds to make a decision about a health care agent and how he wanted to be treated.  I would have preferred to talk with him about his wishes over tea or a family dinner.  Fortunately today, 13 million Americans are having those conversations using a document called Five Wishes. In a clear, easy-to-follow-format, this document helps you indicate your wishes about:

  1. The Person I want to Make Care Decisions for Me When I Can’t
  2. The Kind of Medical Treatment I Want and Don’t Want
  3. How Comfortable I Want to Be
  4. How I Want People to Treat Me
  5. What I Want my Loved Ones to Know

Many Councils on Aging, religious organizations, and attorneys are helping older people thoughtfully complete their Five Wishes long before they face a serious medical crisis.  You can order a copy here for $5. (A reminder: I do not have a financial arrangement with this organization). Consider buying a copy and using it to jump start a conversation with your parents.

Older loved ones are not the only family members who need to designate a health care agent.  Consider the following nightmare scenario. Your 18-year old daughter is in an automobile accident and is lying unconscious in the hospital. You rush to the hospital only to learn that you are not legally authorized to access information about her medical status or to direct medical treatment. Read more here and then consider contacting your attorney to draft a health care proxy for your adult children on their 18th birthdays.

Has each adult in your family designated a health care agent?

©Circle of Life Partners™

Power of Attorney

by Jan Simpson

My father called for my help, his voice laced with worry and regret. That morning he had learned that the pain in his side, a pain that he thought was caused from a touch of pneumonia, was lung cancer. After hearing the news, he contacted his attorney and then he called me. He didn’t want to talk about the cancer, in fact, he didn’t want to talk about himself. He wanted to know if I would be willing to help my mother “pay bills and such.” He had asked his lawyer to draft a legal document called a durable power of attorney.

A durable power of attorney is one of two important legal documents used to help support the life of an ailing parent or loved one (the second is called a health care proxy or a health care power of attorney). A durable power of attorney gives the person named broad power to manage someone’s financial assets. With that document in place, I could pay my parents’ bills, sell their house, take out loans, access their safe deposit box, and conduct any number of financial transactions on their behalf. Unlike a standard power of attorney document, the durable power of attorney gave me that authority even if he or my mother were declared mentally incapacitated.

My father knew that he and my mother needed support through the journey that lay ahead of them. Yet I heard in his voice that this decision, to ask me to assume a durable power of attorney for him and for her, was a difficult one.

Most of us prepare a will somewhat unemotionally; we know that death, like taxes, is inevitable. But giving an adult child the authority to make financial decisions is fraught with emotion, an admission that one’s ability is declining. It can be difficult to decide who is trustworthy, available, and able to make decisions in your stead. In a large family, parents may hesitate to choose one family member over another, not wanting to hurt feelings. In other families, parents may not feel comfortable asking any child to assume that level of control. And then, there is simply denial.

I felt awkward on that first Friday morning I sat at their kitchen table to pay the bills. I tried to dampen my discomfort by telling amusing stories about my children. My mother made a pot of tea, my father worked on a crossword puzzle. We silently acknowledged the change in our relationship and did our best to ignore its implications. Weeks turned into months, months into a year and I came to appreciate fully my father’s decision, for my parents were free to focus on their medical ailments and to enjoy time with their grandchildren without worry about “bills and such.” Equally important, I had a reason to spend a few hours with them alone each week, laughing and joking and relishing our time together.

Over cups of tea, I learned how my parents managed their household. I knew where their money was invested, where the insurance policies were stored, how their pension was distributed, and where their accountant lived. When my father passed away two years later, it took only a few months to transition all of the paperwork seamlessly for my mother. She would live for four more years without concern about money matters.

Have your parents or older loved ones prepared a durable power of attorney? Have you?

©Circle of Life Partners™

Don’t Give Up on Me!

I wrote Don’t Give Up on Me! from an outline of the 50 things I wish I had known before entering the last decade of my parents’ lives.  It’s a fast-paced, show-and-tell book that brings you ringside during those very crazy years, helping you to understand not just the what but also the how of providing support.  How do you wrestle the checkbook or the keys away from mom?  How should you and your parents navigate the medical system to get the care they need?  What happens if one shows signs of dementia?  How can grandchildren be supportive? What legal documents really matter? What influences longevity? Is the doctor always right?

Today, there are thousands of websites and dozens of books that offer information, but Don’t Give Up On Me! is a great place to start, the place to find the initial and critical pieces of information on caring for your parents.

I hope you will read my book and join forces with me to share your knowledge with others.  All profits will be used to fund programs that serve our elders and support their caregivers or care partners.

©Circle of Life Partners™