Death: The Topic No One Wants to Discuss

Life is a journey.

Death. If you created a party game where you had to quick! give a negative word, death might be the first one uttered. We fear death, avoid death, make jokes about it to ease our pain. But every one of us is mortal and so truly death is part of us—it is the end each of us will and must face.

And life.  It’s a journey, a phrase expressed by spiritual writers, a concept and image befitting the mysterious bends and turns in life that none of us can foresee.

But is ignorance bliss when it comes to our death and individual mortality? No.

Ask yourself, where would you want to die? 90% will answer, at home.

Consider. Where do most people die?  80% in nursing homes and hospitals.

Why the severe disconnect?  Monica Williams-Murphy, an ER physician, writes that we as a culture have created it because of what we believe about death.

  • Death is a medical event;
  • Medical technology can delay or cure death;
  • Talk of death does not belong in social circles; thus practical decisions related to it, like advance directives, funeral plans, or living wills are rarely addressed;
  • We have lost deep intimacy in our relationships, resulting in a scramble to keep the dying one with us so that we can clean up the mess we have made before they die.

Just this week death has been more present in my life.  A young man in our community died suddenly; a close friend who I love dearly is dying in hospice; and a friend has more than once questioned my decisions concerning the care of my 96-year-old mother who is in late stages of dementia.  You might say I am fulfilling one of Williams-Murphy’s cures for the 80/90 disconnect:

  • Take a natural view of death. Understand that death is a natural event that can usually be comfortably and peacefully managed at home or in a pleasant hospice setting.

Williams-Murphy writes USUALLY—the accidental death of the young man in our community was a shock.  But we all know this happens and we all know someone this sadness has happened to: my father died at 45 of a heart attack leaving 3 little kids; daily, accidental deaths or incidents of war leave families bereft.

  • Know that the appropriate use of medical technology at the end of life is the aggressive treatment of pain or any uncomfortable symptoms.  Not: ventilators, ICU admissions, and CPR. We must effectively move from “high tech” to “high touch” medicine at the end of life.  Comfort and communication from friends and family should be the focus.

Williams-Murphy states that the above can only be accomplished if we are able to talk about death and dying in our social situations and acknowledge that death is fundamentally part of each of our lives.  If we openly talk about death, we ease the decision-making burden of families because they will know what we need and want when our time comes.

My loving friend in hospice lives this.  Lives it right now, surrounded by her sons, her husband and family, her friends.  Surrounded by love.  And my mother has come to know it, also surrounded by caring people who understand that dementia is a progressive disease, that patients need to be watched and monitored so they will not hurt themselves or wander away.  I chose safety and consistency for my mother;  I had to admit that she has a mental illness.

Finally Williams-Murphy writes:

  • We must discover the power and gifts inherent in the end-of-life period when the sure knowledge of coming death creates an emotional window of opportunity—love may be freely expressed, old grudges fall away in insignificance, and closure obtained that remained elusive at other times of life. We must focus on creating quality of time at the end of life so that these gifts may be enjoyed.

I don’t wish death into your lives.  I do provide here a link to find Advance Directive forms for the state you live in and beg you to have this discussion with those you love. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

You don’t need a malignant diagnosis to begin the process.  Take a healthy walk and talk—it’s an integral part of the journey of life.

Thanks to Dr. Monica Williams-Murphy and her blog post Create Peace and Dignity at the End of Life.   

Thanks to Google Images

Palliative Care, Hospice Care

Palliative Care, Hospice Care

You love your parent, but love does not make these decisions easy.

What are the differences between hospice care and palliative care? Any caregiver who sees the quality of life ebbing away in their parent, child or whomever they are caring for, begins to think about comfort.  Comfort is about being pain-free so that one can sleep, eat, and perform necessary bodily functions.  Comfort is what both hospice and palliative care provide.

Comfort is pretty hardcore basic.  But at the end of a long illness, or as one is approaching an involved cancer treatment regime—comfort is paramount.

This is also true of the elderly.  In this group of people very often much has already been lost.   The elderly experience diminished senses: sight or hearing, taste or smell; and sometimes all of these including touch.

Often the elderly are experiencing progressive dementia.  The synapses of the brain no longer fire as they should; memory is lost and with memory the ability to read a book or a newspaper, watch a film and in severe cases even carry on a conversation.  If you cannot remember what was just said, you cannot converse in a meaningful way.

For those with dementia and Alzheimer’s disease reality comes and goes.  Sometimes your aunt or uncle or parent makes sense.  But often they speak of a reality that is made up of dreams, fantasies or the belief that they are still living their past lives.  My 95-year-old mother tells me she is working part time, going to the theatre and singing in the choir.  She is no longer able to do any of those things.  She is living in a senior facility.  She cannot walk and is confined to a wheel chair most of the day.   When those snatches of her past, which are more ingrained in her mind than her recent life, rise to the surface, she goes there to live.  It’s familiar, comforting.

Comfort is what she needs and deserves.  And mercy.  Understanding.

So how do we comfort ill children, aging parents, spouses who are facing cancer treatment?  With palliative care.

This system grew out of the need to provide a quality of day-to-day living that is pain-free.  Whether a person is dealing with a chronic illness or about to have chemotherapy, palliative care creates goals so that a person will experience the treatment or live with the disease free of pain.  Her or she will experience a life of comfort and hopefully a sense of peace.   Palliative care does not preclude other care to possibly cure the cancer or push back the progression of the chronic disease.

Hospice is also palliative care, but it is set within a particular time frame.  Sometimes doctors must sign paperwork stating that the client has been judged to be at the end of life.  Pain relief and comfort are provided as well as emotional and spiritual help.  Both hospice and palliative care are founded on principles that affirm life and acknowledge that death is a normal process, a part of the life spectrum and should be talked about and dealt with—not shunned and avoided.

Palliative care provides relief from pain and physical symptoms that create daily stress in a person’s life.   Its purpose is neither to hasten nor to postpone death.  Palliative care providers work with clients to integrate spiritual and psychological help and to create a support system so that patients can life as actively as is possible for them.  Palliative care provides holistic comfort and thus improves the quality of life of the client and his or her family.

This past week I had to decide whether to place my mother on hospice or to allow her the Medicare benefit of rehabilitation after she had surgery on a fractured hip.  Because she completed a 3-day hospital stay, she is allowed 1-20 days of skilled nursing paid for by Medicare.   Because of her age, I could also ask to have hospice care only.  On the hospice plan, no physical therapy would be done.  I consulted with her physician and because my mother has rebounded before, my family and I chose Medicare.  This was not an easy decision to make.

Comfort will always be my main concern as I work with my mother’s facility, doing whatever I possibly can to care for her in her last years, months, and days of her life.

If you are facing similar challenges, please comment.  Your input is valuable to me and to other readers who like you and me will someday be faced with making a decision between hospice care and palliative care.

Thanks to Google Images