Brittany Maynard

Brittany Maynard was 29 years old when she died. On November 1, 2014, she took a lethal dose of medication with the intention of ending her life.  She had been diagnosed with an incurable cancer of the brain on January 1, 2014 and in April was told her life expectancy was 6 months.  Adventurer, world traveler, loving wife and daughter, she was quick to point out that it was cancer that was taking her life.  She was choosing to “end it sooner and in a lot less pain and suffering.”   Her greatest fear was that she would wait too long, and the disease would take her autonomy away from her.  She was quoted as saying, “the freedom is in the choice.”  According to CBS, there were 10 million hits on her original You Tube video.  Clearly, she sparked some important contemplation and conversation – not only about death but also about hospice & suffering.

Could Hospice Have Helped?

As a 16 year veteran of hospice care, I am always sad when I hear that someone has not chosen hospice care to accompany them on their last journey but instead has chosen to end his or her life sooner to avoid greater pain and suffering. I know into my bones that hospice staff are experts at pain management.  I know too that hospice spiritual care coordinators are adept at supporting patients and family members during their times of spiritual crisis.

As a hospice RN, I once took care of a ‘confused’ patient whose anxiety was unbounded. Her family believed we had successfully managed her pain and discomfort, but she wouldn’t (or couldn’t) stop pacing.  Days went by and it seemed that everything we tried did not bring her comfort or peace.  One day, our spiritual care coordinator walked back and forth with her in her living room and recited the 23rd Psalm over and over.  “The Lord is my shepherd.   I shall not want…”  Gradually, and much to her family’s relief, she returned to the couch and slept.  She didn’t pace again, and less than a week later, she died.

CNN quotes Ms. Maynard as saying, “I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind. Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that.  I did not want this nightmare scenario for my family, so I started researching death with dignity.”

A ‘Good Death’

I don’t believe that Ms. Maynard thought that those who do choose to die with hospice and have the kind of experience she described as dying without dignity. I believe she was speaking only for herself and that she felt, for her, that scenario would exemplify death without dignity and that it would be unbearable for her family to witness.  I respect her insight into herself and her family.

When I was first starting out as a hospice RN, I relied on those with more experience to teach me.  A pastor colleague introduced me to the idea that it’s not our (hospice professionals’) place to assume we know what a ‘good death’ looks like for the patients we serve.   Nor is it our place to squelch what they experience solely for our own comfort.  The patient and the family drive the care they receive.

In that vein, I re-examine my thoughts about Ms. Maynard and her decision. I know what hospice brings to a patient and family because I’ve seen it – over and over and over again.  There’s a growth and a sense of awakening that often happens when a patient and family travel the journey and let it evolve as it will.  Perhaps the only way to know it is to experience it.

Suffering

I have often thought about suffering. I think most would agree that suffering can happen on multiple levels:  physical, emotional, spiritual and perhaps even social.  Victor Frankl, an Austrian psychiatrist who survived a Nazi concentration camp in WWII wrote about suffering in his book Man’s Search for Meaning. His thought was that we can endure great suffering if we are able to attribute meaning to it.  I have long wondered if suffering has a purpose or role, particularly at the end of life, not just for those who are dying but also for those who live with, encounter or care for dying individuals.  Might suffering present the opportunity for spiritual lessons or growth?  I don’t know.  Did Ms. Maynard miss something because she chose to end her life before the cancer did?  I don’t know.

I am acutely aware I have not walked in her shoes. I wish good things for the spirit of this young woman and her family.  I still have questions, and perhaps they won’t be answered in this lifetime.  I still ask them.

I welcome your thoughts on this.

Theresa Lynn, RN, PhDc
Executive Director

 

Photo credit: Craig Gardiner Photography

Hospice Support for Patients and Families

Learn more...

6 comments on “Hospice & Suffering at the End of Life: The Brittany Maynard Story

  1. Dear Dr. Lynn,
    I am currently a student at Liberty University earning a Masters degree in Human Services and I desire to work in Hospice in some capacity. I am currently writing a research paper on the future of hospice care. My Thesis statement is : End of life care is advancing in our world today. These advances have significant implications to hospice care and the repressing of future advancements. Basically my paper tackles the culture of death in our world today. I define Palliative sedation , physicians assisted suicide and euthanasia. I also add reference to late stage abortion, euthanasia – now legal in Canada, the glorification of suicide. I discuss the ethical debate and the controversies. I end with the detriment of silencing end of life suffering as a repression to the advances that end of life care can/could make. Ways to improve care, family relationships, end of life resolve- emotionally , psychologically and spiritually are all diminished when we trade dignity ( making meaning out of it) with a “right” to die within a premise that this is somehow preserving one’s dignity- meanwhile sanctity of life is lost. thoughts?

    • Elizabeth – Your paper sounds interesting and ambitious! Would love to read it when you’re done with it.

      Theresa Lynn, PhD, RN, LMSW

  2. My husband was in hospice care. It was an ok place for him to pass pain free. For me it was horrible sitting and waiting for him to pass. I’ll nevet be the same again. It’s a place to go to pass. That’s it. They gave him pain free care but left me sad and confused. I’m still dreaming about the hospice facility.

    • Dear Nancy,
      All hospices are required to have a grief support program, and I would encourage you to think about getting in touch with the hospice that cared for your husband to seek out grief support services. You may be able to get questions answered in addition to receiving one-on-one or group support. I do wish you well.

  3. I quote you here: “I have long wondered if suffering has a purpose or role, particularly at the end of life, not just for those who are dying but also for those who live with, encounter or care for dying individuals. Might suffering present the opportunity for spiritual lessons or growth? I don’t know. Did Ms. Maynard miss something because she chose to end her life before the cancer did? I don’t know. ” END QUOTE

    As a person who suffers daily with stage 4 emphysema, with breathlessness so extreme that I frequently feel I am going to die, I find it truly sad that you could consider that others’ suffering might have a purpose for those witnessing it. Could there be anything more selfish than to seek purpose in another’s pain.

    I do not fear dying, or being dead, but I fear so much that I might meet attitudes such as yours in hospice or hospital that will allow me to suffer, viewing it as “natural” that I too consider taking control of my destiny.

    Lets step away from the philosophical arguments for a moment. We are living creatures, pain is pain, no-one would watch an animal suffer whilst giving time to consider the lessons that one might learn to apply to one’s own life (in fact it would likely be illegal), so why do that with a human.

    You say it is not your place to assume what a good death looks like but you wonder whether Ms Maynard missed out on something – which you imply might be spiritual lessons – because she chose not to suffer her illness until the bitter end. I find that disrespectful and presumptuous. Ms Maynard may have decided that she experienced and learned all she needed through her illness as it was. Perhaps Ms Maynard having had all autonomy removed through cancer, decided to take control of the one thing she could.

    • Dear Anna,
      You make excellent points. I cannot imagine living with what you are experiencing. I appreciate your post and would encourage you to seek out palliative care if you haven’t already done so. They may be able to treat your symptoms and help you live more comfortably.

Leave a Reply

Your email address will not be published. Required fields are marked *