What advice do hospice patients have about how we should live?
In this episode I’ll share some of the wisdom I gathered from my hospice patients as they faced the end of life. This simple advice can help us live more fully with less fear and worry.
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Today I have a huge thank-you for my new patron on Patreon.com/eolu: Kerrie Noonan. Thank you for your support Kerrie!
In the News:
An article on Time.com listed “7 New Jobs That Are So ‘2017’” and included Death Doula as one of the new occupations! What’s great about this is the fact that a major news outlet is breaking through the taboo and using the word “death” and that there has been a recognition of the importance of people who assist others at the end of life. In Episode 71I listed Death Doula as one of the trends for the year and included links to several training programs for becoming a doula. If you are considering a career change or looking for some post-retirement work you might want to become a midwife for the dying. There will be a huge demand in the very near future for people fulfilling this role.
In a story reported on the Today show we learned that 31-year-old actor Chris Salvatore invited his 89-year-old neighbor to live with him when she was no longer able to live on her own. Salvatore and Norma live in the same apartment building and had been friends for about 5 years when she was hospitalized with leukemia and respiratory problems. When doctors told Norma she would have to go to a long-term care facility because she had no family members to care for her, Chris stepped up and took her into his home. He now provides care for her as she faces the end of her life. Doctors didn’t expect Norma to live through the holidays but she is thriving in her new home. This example of selfless generosity is exactly what we need as we move into the future where 25% of Baby Boomers will have no family members available to provide care to them. Well done Chris Salvatore – a huge salute to you from End-of-Life University!
What My Hospice Patients Wanted You to Know:
Here is some of the wisdom my hospice patients shared with me as they neared the end of their lives. I promised them that I would bring their messages to you since they are no longer here to speak for themselves.
“What seems important now doesn’t matter in the end.”
“Don’t worry so much about diet and exercise.”
“Your doctor doesn’t have all the answers for you.”
“Your life’s purpose isn’t what you think.”
“Religion is less important than learning how to love others.”
“Dying isn’t as scary as you think.”
“You’re going to die anyway so you might as well be ready.”
Listen to this episode so you can learn more about each of these statements. And then maybe you’ll be inspired to change some aspects of your life and prepare for the very end!
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Tune in next week for another new episode and until then remember:
This week Dr. Karen Wyatt addresses ‘compassion fatigue,’ which is an occupational hazard for those who care for others who are suffering emotionally or physically.
Death Expo is coming up November 10-13, 2016 and you can register by going to DeathExpo.com. There will be 12 speakers on various aspects of death, dying and bereavement, so be sure to sign up for this FREE virtual conference!
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Today’s discussion centers around Compassion Fatigue and you will learn:
What is compassion fatigue
Who is susceptible to compassion fatigue
The signs and symptoms of compassion fatigue
Tips to prevent it:
Witnessing perspective (Galaxy view)
Prayer and contemplation
See the links below to get companion resources for this talk
In this episode Dr. Karen Wyatt discusses the fact that according to the Nebraska End-of-Life Survey, even though 70% of patients surveyed want their doctors to discuss their end-of-life options but only 21% of them have actually had those conversations.
In addition, while 86% of doctors agree that they themselves would enroll in hospice if terminally ill, only 27% of them are comfortable discussing hospice as an option with terminally ill patients.
There is a huge disconnect between what patients want from their doctor and what they receive and also what doctors would do for themselves at the end-of-life and what they do for their patients.
Today’s conversation looks at reasons for this disconnect to point the way toward changes that are needed in how medicine approaches the end of life. Here are some of the attitudes and mindsets that make it difficult for some doctors to address death and dying, based on conversations between Dr. Wyatt and her colleagues:
“It’s not my job. My passion is for saving lives.” Ideally doctors must maintain their passion for life, but must also make room for death, since every patient will ultimately die. Doctors need to cultivate a view of life that includes the reality of death.
“I don’t have enough time and the end of life is less important than other issues I’m expected to discuss with patients.” The average primary care visit with an elderly patient last 15.7 minutes and covers 6 topics. Doctors need to view the end of life as the final stage of development and give it the same attention as the other stages of development.
“Death represents failure.” While death in general is a natural process and not a failure, for doctors the death of a patient can be a devastating experience, especially if it is unexpected. Doctors carry an enormous burden of responsibility for the health and wellbeing of their patients and mistakes can lead to complications and death. For doctors it is difficult to carry both responsibilities: to preserve life and promote health while also honoring death in its place.
“I don’t want to take away my patient’s hope.” Many doctors recognize that optimism and positivity are essential for a patient’s survival and wellbeing. But they view curative treatments as the source of that hope while failing to recognize that hope has many different meanings for patients. They promote ongoing treatment in order to keep hope alive while failing to offer emotional and spiritual support that can foster hope even in the face of death.
By recognizing the obstacles that keep doctors from engaging in end-of-life interactions with patients we can help overcome them over time. It’s important to have compassion for everyone involved as we try to move forward and evolve care at the end of life in our society.
You can support EOLU by making a small pledge of financial support ($1 or $2 per month) at Patreon.com/eolu. Be sure to tune in every Monday for a new episode, leave comments and write reviews on iTunes! Remember to:
Marggie Hatala – author and teacher of a writing class related to end of life; her books are “Sally: A Memoir” and the forthcoming “Life as Prayer”; learn more at www.marggiehatala.com
Next she begins the Update for September by talking about the new documentary film currently streaming on Neflix: Extremis, which won 1st place at the Tribeca Film Festival. Please see this film which takes place in the ICU at Highland Hospital in Oakland and features Dr. Jessica Nutik Zitter. This is a must-see film that brilliantly depicts the conundrum that exists at the end of life when painful decisions must be made. By showing the real-life conversations that take place in the ICU between staff, family members and patients, a case is made for everyone to complete their advance directives and prepare their loved ones to honor their wishes at the end of life. But the painful process of decision-making becomes apparent as each individual struggles with the unknown and the unknowable in these dire situations.
The other topics covered this month include:
BMJ Online report that patients who receive hospice care for the last 6 months of life have better pain control, fewer hospital days, and are less likely to die in the hospital or ICU.
Researchers at John Hopkins found that their palliative care program led to savings of ~ $19 million over 5 years in addition to improved quality of care and patient satisfaction.
Study originally published in Health Affairs and reported on Reuters online showed gaps in palliative care in the US. Read the article.
“What it feels like to die,” an article in The Atlantic discusses the active dying process from the patient’s perspective. Read the article.
Friends and Family Letter Project by Dr. VJ Periyakoil at Stanford includes 7 prompts for letter writers to leave messages for their loved ones. Read the article.
“7 Songs for a Long Life” documentary from Scotland that depicts how terminally ill patients use singing as therapy. Read the article.
The Friendly Atheist Julie Stahl reminds us not to impose our own religious or spiritual beliefs on those who are grieving and may not share your perspective. Read her blog.
Thanks for tuning in to the podcast! I hope you enjoy this information. If you feel inspired to offer a little support go to Patreon.com/eolu to join the community!
In this episode Dr. Karen Wyatt highlights several excellent books about the end of life that have been sent to her by their authors. If you have considered starting an end-of-life book club (as mentioned in Episode 33) you’ll find many great books to choose from in this list. Here are the book titles and authors, along with links for learning more or purchasing the books:
“My Voice, My Choice: A Practical Guide to Writing a Meaningful Healthcare Directive”; by Anne Elizabeth Denny; www.anneelizabethdenny.com
“LastingMatters Organizer: Where Loved Ones Find What Matters Most”; by Barbara Bates Sedoric: www.lastingmatters.com
Join Dr. Karen Wyatt and her guest Tom Murray, director of the beautiful feature-length documentary Love in Our Own Time. They will discuss the making of this film, which follows the lives of ordinary Australians as they face the big transitions of life: birth and death. “Love in Our Own Time is a film that speaks directly to its audience about the nature of life and death. It is a journey to the heart of what it is to be human that gives us all pause to question the lives we lead.” (from the film’s synopsis) Tom Murray reveals his own inspirations for creating the film and the transformation he experienced during the process.
In this interview you will learn:
How Tom Murray was inspired to create this film after living and working amongst the Yolngu Aboriginal people
How this film is being used in medical education settings to increase awareness about the end-of-life
How you might arrange a screening of Love in Our Own Time for your own community
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It’s the end of August and time for another End of Month Update on the End-of-Life. Today Dr. Wyatt discusses the following stories from the news and social media:
Baycrest Health Sciences reported a study that ongoing mental stimulation for the elderly can counteract the contribution of the Western diet toward cognitive decline
Some hospitals are creating Acute Care for Elders units to ensure that the elderly receive focused care that will enable them to return to a functional level and be able to return home. There are ~200 such units in the US right now.
UCLA’s Geriatric unit has found significant overmedication of their elderly patients and has hired a pharmacist to help adjust medications for their patients – reported in Washington Post
CMS encouraging states to use Medicaid dollars to pay for in-home care for their elderly rather than nursing home stays
Pilot Study shows that offering intensive education for in-home caregivers helps decrease ER visits and hospitalizations
Illinois law regulates training standards for Alzheimer’s caregivers
Revised “Demoralization Scale” for evaluating patients decline in morale during cancer treatment
Patients who use emotional support and acceptance as coping strategies have increased quality of life, decreased anxiety and depression compared to patients who resort to denial and self-blame
Story of Disney Princess Party held for the daughter of a young mother who is dying of brain cancer
Story of California woman with ALS who held a 2-day “going away” party before using the assisted dying law to end her life
Thanks for tuning in to the podcast! Remember you can support this show and the End-of-Life University Interview Series on Patreon.com/eolu.