The Wish to Have Death with Dignity

brittany-maynard-1-435The physician-assisted end-of-life debate received a jolt the last few weeks as an unlikely heroine for the Death With Dignity movement emerged in the 29-year-old terminally ill brain cancer patient Brittany Maynard. Given the choice of a painful death where her seizures will multiply, intensify and last longer, her memory loss will become permanent and her excruciating headaches will rob of her of any peaceful, pain-free moments, Maynard chose to end her life her way. Along with her newlywed husband and her mother and stepfather, Maynard moved this summer from Northern California to Portland, Oregon, one of only four states where adults with terminal diagnoses can legally determine when and how they will die.

The death with dignity movement began back in the early ‘90s in Oregon when a ballot measure passed and eventually became law in 1997. The definition of death with dignity is that mentally competent adults who have a terminal illness may request a doctor prescription for life-ending medication that will be self-administered.  It was around this same time that Jack Kervorkian became a lightning rod for the controversial act of euthanasia where in his estimation he helped 130 people in physician-assisted suicide.  To date, Oregon, Montana, Washington and Vermont have state laws protecting death with dignity decisions and legally allowing participating physicians to prescribe lethal doses of medication to terminal patients for self-administration.  New Mexico courts have upheld cases although appeals are in progress and several other states have pending death with dignity legislation including Connecticut, Hawaii, Kansas, Massachusetts, New Hampshire, New Jersey and Pennsylvania and a measure is set to be introduced in Colorado in January.

Over the last 20 years, national Gallup polls have shown the majority of Americans – 70 percent – support death with dignity rights for individuals. And while end-of-life conversations are difficult, especially for adult children serving as family caregivers for their older parents, a Pew Research study found 35 percent of Americans have actually put their wishes in writing.

In order to ensure wishes are carried out, it is not just enough to discuss it with family. Having a legally binding document, typically a living will, durable power of attorney for medical decisions and a do not resuscitate (DNR) or do not intubate (DNI) order documents are required. One document that is lesser known but extremely powerful and helpful to caregivers is called The 5 Wishes. More than 18 million Americans have created a 5 Wishes document that meets legal requirements as a living will in 42 states. The document outlines: 1) Who you want to make your health care decisions if you are unable; 2) The type of medical treatment you want or don’t want; 3) How comfortable you want to be; 4) How you want people to treat you; 5) What you want your loved ones to know.

Trends in health care show as a nation we are learning how to die with dignity. With the increase in hospice care at home or in long-term care facilities, more than half of the 2.5 million people who die every year can receive compassionate care where a team of health care and spiritual experts help the patient and family members cope with end of life. But that does not mean end-of-life wishes are overlooked in the hospital setting where the Centers for Disease Control and Prevention report one-third of all deaths occur.

In May, several Los Angeles area hospitals and health care providers endorsed some groundbreaking guidelines on how to facilitate patient end-of-life wishes. The coalition included: Cedars Sinai Hospital, Healthcare Partners Medical Group, Kaiser Permanente Southern California, Keck Medicine of USC, Los Angeles County+USC Medical Center, Memorial Care Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence Trinity Care Hospice and UCLA Health System.  The guidelines require doctors, normally only schooled in saving lives, to explain clearly to patients when a medical treatment under consideration, such as feeding tubes, intubation or dialysis may deprive the person of life closure or preclude a peaceful death. The guidelines are the compassionate care California health care organizations are striving to achieve where patients have the chance to say to a loved one, “I love you,” “Forgive me,” or “Good-bye” one last time.

When Maynard’s April YouTube video about ending her life on her terms went viral and recently surpassed 9 million views, it was because a youthful, vibrant, newly married woman was deciding how her life would soon end.  But dying at 29 or 99 should be the same. Maynard said at the time, “I had no choice to be diagnosed with a brain tumor but I can make a choice how I spend my last day.” For Maynard that means spending it surrounded by family in her bed at home and free of terrible pain. She was upset that people would see her choice as suicide calling that label for her situation “really unfair.”

For the person with the diagnosis, the dilemma is how not to have death affect loved ones in devastating ways. Maynard’s argument for choosing death with dignity is to spare her husband and parents the struggle of watching her in pain, losing her quality of life day by day, hour by hour.

Although Maynard released a second video last week explaining that while her health continues its rapid decline, she can still smile and laugh with family and friends and that she may let the November 1 chosen date pass, as I write this article the news reports Maynard has in fact taken her last breath in the arms of her husband and mother.

Maynard’s mother, Debbie Ziegler, had said she would be “honored” to become a caregiver for her adult daughter as she loses her faculties. Ziegler would have lovingly bathed, fed and diapered her adult daughter as she had when she was a child. But in the end, Maynard’s mother said the decision is her daughter’s.

“It’s not my job to tell her how to live and it’s not my job to tell her how to die,” said Ziegler on the video.  “It is my job to love her through it.”

It is this gift of choice about how and when we will die that may be most precious to all of us and the gift which family caregivers can become the partner in fulfilling.

 

Volunteer to Help a Caregiver

Volunteers dreamstime_m_17430748 (2)To kick off National Volunteer Week, read my article for Huff Post 50 on 8 Ways You Can Volunteer to Help Caregivers.

Help! I Need Somebody

It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself. – Ralph Waldo Emerson

Almost 50 years ago, the Beatles hit Number One on the Billboard charts with the song Help! – a perfect anthem for this week.   On April 15-21, we officially commemorate National Volunteer Week, and I am giving a “shout out” to those 65 million family caregivers nationwide who essentially have volunteered to care for a loved one who is sick, getting older or has a disability.

However, this is a time for us all to think about volunteering.  In honor of our nation’s caregivers, what can you do to help them?  Read on about the ways you can volunteer to help a caregiving friend, volunteer for caregiving organizations and why caregivers are more likely than the general population to become a volunteer when their caregiving tour of duty has ended.

Help the Caregiver in Your Life

It might be your mom, your brother, a sister-in-law, a co-worker, a neighbor or good friend but more than likely if you start asking those within your circle of family and friends – you will find a family caregiver.  Two important things to know about caregivers:

  1. They often feel stressed, overwhelmed and suffer from burn-out from their caregiving duties which can ultimately impact their own health and well-being.
  2. They often feel alone in their caregiving journey which can lead to depression.

Here is what you can do to help:

Create a Community of Care – there are a few online sites where can you create private communities around the caregiver.  One of my favorites is Lotsa Helping Hands.  This free service allows you to send emails out to the caregiver’s inner circle asking them to sign up to be volunteers. There is a sophisticated calendar tool where you list tasks for things to help the caregiver.  It might be picking up the caregiver’s kids at school because she is at the doctor’s office with her mom, or dropping off a meal for her family because she is at the nursing home that night visiting her loved one or sitting with her dad so she can get her hair done or go to the gym.  What I like is the focus is on helping the caregiver.  By giving that caregiver a “break,” also known as respite, this type of volunteering is a personal gift that every caregiver needs.

Volunteer for a Caregiving Organization

There are numerous organizations which offer an opportunity to get involved in helping caregivers in your local community.  Whether it is home meal delivery, transportation needs, raising funds through a walk-a-thon – these are just a few things you can sign up for which support the caregivers where you live.

Here are some Web sites to check out in the various areas of caregiver support:

Home meal deliveries:  More than eight million caregivers live long distance from their loved one and cannot be there every day to ensure they eat properly or at all.  Meals on Wheels has more than 2.5 million volunteers who pack and deliver 1 million meals every day to those who are homebound – many of them over the age of 60.  Their latest campaign is for Mother’s Day – volunteer to deliver a meal, donate $7 for a meal for a mom, or send a greeting card from their Web site.  Meals on Wheels is about more than food – read my blog on Soul Food.

Transportation and Senior Driving Safety: Getting around is another way to help caregivers and their loved ones.  Check these sites for becoming a volunteer driver:  National Center for Senior Transportation, CarFit,  ITNAmerica

Faith-based organizations: Many local churches, synagogues and mosques offer support groups and other ways to help caregivers.  An inter-faith non-profit organization which has a plethora of volunteering opportunities is National Volunteer Caregiving Network (formerly known as Faith in Action Network).  Typical services include transportation, grocery shopping, minor home repairs, friendly visiting, bill paying, light housekeeping and respite for the caregiver.

Hospice care:  When facing end-of-life situations, there is an amazing network of volunteers for hospice support.  More than 460,000 Americans volunteer every year to bring comfort and peace to grieving families – and, 20 percent of these volunteers are new to hospice care.  Hospice volunteers find it personal gratifying and emotionally fulfilling to help families through what they call this “living” rather than “dying” experience.  In fact, to de-institutionalize hospice care, facilities who receive Medicare or Medicaid reimbursement must have 5 percent of the hours of care provided be performed by volunteers.

Former Caregivers As Volunteers

You would think once a caregiver has been through their journey of caring for a loved one, they are ready to relax and take a long break.  Not so according to a study published in the Journal of Gerontology that found that older adult caregivers were more likely to be volunteers than non-caregivers.

The study found that caregivers become “embedded in networks” once they become a caregiver, thus making them more likely to continue to seek these social interactions with like minds.  They also have a routine of performing tasks for others – something they do not abandon even after caregiving ends.  Thus, caregivers are more likely to become involved in social networking and organizational memberships.  And, they may become very passionate about a cause which affected their loved one – great high profile examples are David Hyde Pierce who is a tireless advocate for finding a cure to the Alzheimer’s disease that affected his father and grandfather, and Holly Robinson Peete who created the HollyRod Foundation to support families facing Parkinson’s disease and autism which affected her father and son respectively.

Also, older adults find volunteering an integral part of their desire to give back to society (a strong trait that ties us Baby Boomers together). Thus, caregivers uniquely combine their “obligatory” activity (caregiving) with later “discretionary activities” (volunteering).

One way for former caregivers to get involved in their communities by helping other caregivers is through the National Family Caregivers Association Caregiver Community Action Network (CCANers).  This caregiving “mentor/volunteers” network helps to spread the word about caregiving through interaction with private and public agencies especially during November’s National Family Caregiving Month.

Make a plan to “up your cultural capital” and care for the caregivers.  Get up and out and volunteer to support caregivers this week (and every week).