Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, Grief, living with chronic illness, newly diagnosed illness

Can We Really Deny That Children Die?

Last week I wrote my 900th post for this blog. When I wake up in the morning I’ve started thinking about what could I possibly have left to say about health and healing, life and death, and overcoming adversity; and then a story pops up that all I want to say is, “REALLY?”

The Riverside Unified School District has banned John Green’s book The Fault in our Stars. The book has been cited as a book that will last the test of time because it’s a story about love, relationships, quality of life, and death. I read This Star Won’t Go Out by Grace Esther Earl, a real life account of a teen with advanced stage thyroid cancer. Earl and John Green had become friends and although there are similarities between the book and the memoir, Green’s book is fiction.

What was the reason for the Riverside Unified School District removing Green’s book from the middle school library? They didn’t want kids this young 11-12-13 to face mortality. They believe that reading about a teen dying would be too much for these kids to handle. Are the kids in Riverside living in a bubble like the Buddha prior to embarking on his journey to enlightenment?

Do you think that the principal of the school, the librarian, and some parents who voted really believe that children don’t get sick and die? I don’t know about you but if you ever watch television you can’t help but see a commercial for St. Jude’s Children’s Hospital. We have an entire network of hospitals in this country devoted specifically to the care of children and the Children’s Miracle Network. We have the Make-A-Wish foundation, giving children with life-threatening illnesses the opportunity to fulfill something on what we would call their “bucket list”.

I understand that death is difficult to speak about even for adult, but it does happen and denying it only causes greater pain. My hope is that no child has to personally experience illness and death, either their own or that of a loved one, but it will happen.

I’m disappointed that a school district would remove a book like this from their library because they are queasy about the topic. What I know about kids, maybe more so than adults, is that they are extremely resilient. They are inquisitive and would take these topics and want to discuss them, not shy away from them. When I was in high school, one quarter of health was devoted to death and dying. A progressive move on the part of our school district. Perhaps I should give Riverside Unified School District the name and number of my high school so they could temper their own resistance and fear.

Children die and it’s terrible. Removing a book that raises important questions is a travesty. The school should be ashamed of themselves.

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Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, living with chronic illness

A Different Kind of Cafe

When someone asks you to meet them at a café you assume you’ll have coffee and delicious pastries. What if the menu at the café is new and there is no food on the menu. The menu consists of topics of conversation, questions yet to be answered, and an open honest environment where what scares you can be brought out in the open. That’s the café I attended yesterday, The Death Café.

The Death Café started in 2010 in Europe, by Jon Underwood, and has become a global experience. There are approximately eight hundred Death Cafes across the globe. The Death Café is a gathering of those interested in discussing anything and everything related to their beliefs, opinion, and concerns about death and dying.

We live in a culture that has come to focus on living “the good life”. We haven’t quite figured out how to live “the good life”, so why would we think about anything remotely related to “a good death”. We don’t discuss death on any regular basis and when it enters our sphere we’re disoriented and the emotional and spiritual pain we experience can be excruciating.

My work as a psychotherapist for the past twenty-five years has been in the arena of chronic and life-threatening illness. I’ve had thousands of conversations with people about death and dying. These conversations have served as my own personal question and answer session, always renewing and revising my concerns and beliefs about death and dying.

It’s interesting because on my recent family vacation I had a long conversation with my father about my plans for when I die. It has changed over time, but reaching a place of peace is important. It allows me to make plans reducing stress and anxiety for those in my life who will eventually make those arrangements.

The Death Café format was interesting. Anita Larson, the organizer, had anyone who wanted to write a question on a card that was put in a basket. One-by-one the questions were picked out of the basket and the floor was open for anyone and everyone to respond. People were open, honest, and forthcoming.

Having an environment that allows us to take the mystery out of death and dying is critical to living “the good life”. How can we live “the good life” if we’re twisted with anxiety about death, something we have little if any control over. The saying is true, the only thing we have to do in this lifetime is pay taxes and die, so why give the IRS a leg up on what causes us anxiety?

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Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, Having a Voice in Healthcare, living with chronic illness, Living with Illness

Crucial Conversations and Our Greatest Taboo

We’re a verbal culture and we like to talk.  People make their entire living simply by talking and yet when it comes to some crucial conversations we stay so far away that we think we’ll live forever. 

Patterson, wrote a book called “Crucial Conversations” for the business world.  It spoke to the corporate world about how to have important and often awkward or uncomfortable conversations with employees about performance and other issues.  It’s amazing that the medical community hasn’t come up with its own version of this book because most doctors, even oncologists (who deal with more death than most other specialties other than possibly emergency/trauma medicine) won’t or don’t talk to patients about end-of-life care.

There was an article on Comcast this week citing new recommendations for the cancer community from the American Society of Clinical Oncology (ASCO).  The ASCO recommendations are for doctors to have those crucial conversations before the person is rolled into an emergency room or they are on life support.  Too often we’re finding that patients aren’t even aware that comfort care/hospice is available and suffer needlessly as does their caregivers. 

I think the article puts it beautifully about the capacity of you, the patient, they say, “Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”  I understand that there are too apologies that doctors have to make that is not comfortable.  The first is at the time of diagnosis when they say, “I’m sorry to tell you, but…” and the other is “I’m sorry to say that the treatments aren’t working and there are no clinical trials available, so it’s time to talk about end-of-life care.” 

The statistics given by ASCO says that “40 percent of advanced cancer patients have what it calls a ‘realistic conversation’ with their doctors about what to expect and their choices of care”.  The frightening part of that statistic is what follows next, “The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life.” 

The ramifications of that last sentence are that at the end-of-life instead of being comfortable, they are dealing with side effects from chemotherapy and not able to live life unencumbered from machines and hospitals.  No one wants to die but it is inevitable.  Why wouldn’t you want to be comfortable, in the surroundings you desire, and with people who love you the most. 

This is the hardest part, you, the patient, may have to be the one to bring up end-of-life issues with your doctor (no matter your diagnosis).  You may have to be the one who has the strength and the courage to approach your doctor and have this “crucial conversation”.  You may have to be the one who assures the doctor that it’s appropriate and okay to discuss end-of-life care.  You get to be the physician’s coach on end-of-life issues pertaining to you…after all who better to do this job.

I know it’s scary, but if you need some support or have questions about end-of-life care or how to speak with you medical provider you can e-mail me at  Don’t leave your end-of-life care in the hands of another person.  Empower yourself to make these decisions!

Posted in End-Of-Life Care

A Final Goodbye

It came as quite a surprise when I heard about the death of Elizabeth Edwards.  I had followed her story from her primary diagnosis and was always amazed at how she dealt with her illness.  I must admit I thought she said a horrible example at the start when she knew she had a lump, but waited till after the election to go to the doctor.  We all know that time is of the essence when cancer is the diagnosis.

When we learned that her cancer had returned and was metastatic; her ability to be positive, hopeful, and purposeful was truly inspiring.  Her concern for her children was admirable.  Even the news reports about how she was a “mother to the end” when she left the children a letter was very touching.

What can we learn from Elizabeth Edwards?  First and foremost was that when horribly stressful events/toxic events enter your life extricate them from your life.  This was the case when the news broke of John Edwards affair and child.  Elizabeth Edwards knew that this type of negative energy would not benefit her body’s ability to heal.  She removed that stress to the greatest extent possible.

I’m still a bit confused about the final news stories about her decline.  Day one we hear she stopped all treatment at the recommendation of her doctors and the next day she was dead.  I wrote a post about hospice in November and here’s a case where hospice would have been helpful and that would have been a wonderful example to set for others facing end-of-life decisions.

I want to thank Elizabeth Edwards for sharing her story.  I want to thank Elizabeth Edwards for her courage.  I want to thank Elizabeth Edwards for living a full life with metastatic disease.  I hope if you’re diagnosed with a life-altering illness that you follow the lead set by Elizabeth Edwards and live life fully while you can.

Posted in End-Of-Life Care

The Truth is Not Everyone Survives

The saying goes, “The only thing you have to do is pay taxes, and die”.  I guess that’s a reality…I wish it were more.  Unfortunately, the truth is that not everyone who is diagnosed with a chronic or other life-altering illness will live to cherish their golden years.  It can be for various reasons; the diagnosis was discovered to late, your disease doesn’t respond to treatment, or you experience the domino effect where you don’t die from the illness you were diagnosed with but from a complication related to it.

Our culture doesn’t discuss death.  I remember in my junior year in high school our health class was on “death and dying”.  I’m not sure why they were talking t a bunch of teenagers about death and dying when they believe their invincible.  For most of us in the late 20th and 21st century, don’t experience the death of an adult until we’re older.  Our first experience with death is a pet and that can be very traumatic.  However, it certainly doesn’t have the long-term effects of a loved one dying.

I want to talk about end-of-life care because November is National Hospice Month.  Hospice started in England as a way to provide care for those in the end-stage of life.  The requirement for hospice is that your doctor will certify that you have less than six months to live.  Once you enter hospice they stop treatment in hopes of healing the illness.  Medications that are treatment specific are given if they alleviate pain and suffering, but otherwise treatment is stopped. 

Hospice offers support, comfort, and pain management to the individual and support and education to the family.  There are both in-patient hospices and home hospice depending on where you live.  Because we’re so afraid of the dying process and hold on to the glimmer of possibility that we’ll miraculously get well, hospice care if under utilized.  In England the average length of time a person is enrolled in hospice is 17 days; in the United States the average is 7 days.

Have you made your wishes known to others about your end-of-life care?  Have those in your inner circle been willing to hear you talk about death and dying?  Are you willing to let go of what might be the illusion that you’ll walk away from your illness alive and well?  I know that many believe that hospice is the message of defeat.  Actually I believe hospice is the message of triumph.  It puts you back in control of your own life.  It gives you options so that you can be cared for with dignity and compassion.  It gives you the freedom to make conscious choice about how you’ll spend the days you have alive.

There are some amazing stories in hospice about the six month rule.  I was facilitating a support group for cancer patients and a woman in the group in her late 70’s early 80’s had a rare sarcoma.  She’d been through treatment for over a year and then made the decision to go on hospice.  She lived six months and they extended her hospice benefits.  One day she came to group and announced that she had graduated out of hospice.  In order for her to retain her hospice benefits on Medicare in the months to come; she’d have to leave the hospice program until she was “ready” for it.  Can you imagine graduating out of hospice?

During the month of November when we celebrate National Hospice Month; it may be a good time to look at what hospice has to offer.  Know your options.  Give yourself the gift of knowledge and understanding about hospice.  Allow yourself to consider the possibility that if you’re considering stopping treatment, what options will provide you with the highest quality-of-life with the time you have remaining.

I wish you health and healing, but I also want you to recognize the reality of life…that is no one gets out alive.  Find out how through hospice you can maintain control of your care with a little help from those who understand end-of-life care.