We will all do two things in our lives – pay taxes and die.  We do the very best we can to plan for our taxes, why don’t we do as much to plan for our death?  National Hospice Foundation statistics show that Americans are more likely to talk to their kids about drugs and sex than they are to talk with their parents about death.  Fewer than 25% of us have thought about how we would like to be cared for at the end of life and put it in writing. Even though nearly 36% of people will claim that they have told someone how they would like to be treated, in reality it is more likely that that information was communicated as a passing comment.  One out of every two people interviewed said they would rely on family and friends to make decisions for them at the end of life, yet none of them have talked about their wishes!  To compound the problem further, these same interviewees feel that enforcing the patient’s own wishes when they are sick with less than six months to live is the most precious thing you can provide to a loved one.

Dr. Stuart Lazarus of the National Hospice Foundation reveals that despite the fact that hospice care has been successful in America for more than two decades, one-third of Americans do not know that only hospice offers what people say they want when dealing with a terminal illness and limited life expectancy: choice in care, control of pain, medical attention, help for the family, spiritual and emotional support, and the option to remain in their own home.

Hospice is both a service and a philosophy. Hospice embraces the philosophy that quality of life is much more important than quantity and emphasizes caring rather than curing.  The patient and their family have been informed of the diagnosis and they understand that continuing therapy will be palliative rather than curative in nature.  The patient is no longer seeking active treatment for their disease.  The primary goal is to provide comprehensive care to those terminally ill and to their families, helping them to continue life as normally as possible.  Hospice care should allow the patient to die peacefully and with dignity.

Hospice is unique in its approach to patient care.  It embraces the whole person and their family.  Their emotional, physical, and spiritual needs are the primary focus. Quality hospice care relies upon a team approach.  Members of a patient’s hospice care team include:

• The patient’s attending physician.
   

• The hospice medical director who contributes specialized expertise in pain and symptom management and participates in the development in the individualized plan of care.
   

• The social worker who provides counseling and linkage to community services which will assist the patient and family develop coping strategies.
   

• Spiritual counselors if desired.
   

• The registered nurse who identifies physical, psycho-social and environmental needs of the terminal patient and addresses symptom management and comfort.
   

• The certified home health aide who assists the patient with hygiene, feeding, light housekeeping and similar personal care activities.
   

• Volunteers who provide practical help, friendship and support to the patient and their family.
   

• The registered dietitian who provides nutritional counseling, as the food and fluid intake needs change with terminal illness.
   

Since 1983, hospice has been fully reimbursable under Medicare part A.  Since that time, many private health insurance companies have followed suit by adding hospice care to their plans of coverage.  Home hospice care can be accessed wherever a person resides.  In addition to the patient’s own home, hospice care can be provided in a skilled nursing facility, board and care home, assisted living facility or retirement home. 

How many of your reading this article right now have talked with your family members about what you want when faced with terminal illness? Do you have a durable power of attorney for health care in place?  Have you made funeral arrangements?  It is very difficult for adult children to discuss end of life issues with their parents.  The National Hospice and Palliative Care Organization recommends an “asking permission" approach.  Some conversation openers are, “I’d like to talk about how you would like to be cared for if you got really sick. Is that okay?,” or “If you ever got sick, I would be afraid of not knowing the kind of care you would like.  Could we talk about this now?  I’d feel better if we did.”  You will. 

Sherry Netherland is available for seminars for community and professional groups, Corporate Wellness Programs, or as a keynote speaker for your organization.

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