Hospice/Palliative Care. Is it ever too early?
Answer: Probably not.

By: Regina F. McNamara RN, MSN, MPH

Honoring my mother’s wishes to die at home in peace and comfort in the presence of her family was a privilege for us.  I am professionally involved in helping families come to a decision to move their loved one from typical ongoing treatment of disease from which the person is declining and there is no cure, to hospice/palliative care.

There is just one problem:  I would have much preferred we had started the process earlier. 

By virtually all surveys on the topic, the vast majority of Americans ideally want to die at home, without aggressive intervention. There is widespread agreement among experts in the field and physicians that more patients could enroll in hospice and many of those who enroll should do so sooner.

Yet, hospice provides care for only one third of all dying patients in this country, and patients who enroll generally do so very late in the course of illness. The median length of stay in hospice is approximately 3 weeks, and 10% of patients enroll in their last 24 hours of life.

Hospice provides innumerable benefits to patients and families.  Among them; preserving the dignity of the patient and providing support to the family during the disease process and after death, avoiding the dangers of over treatment and hospitalization, and fulfilling the patient’s need for comfort care in their final stage of life.  Medicare and most insurance plans cover all services, medications and equipment.

So what is wrong? What are the barriers to families choosing hospice care for their loved ones?

One now renowned article “Why Doctors Die Differently” (WSJ, February 5, 2012) by Dr Ken Murray, sheds a bit of light on this issue, but also confuses us.  Dr Murray states that he and his colleagues in medicine know the limits of modern medicine so they avoid aggressive futile treatments when it comes to their own care. They know exactly what is going to happen, they know the choices, and they generally have access to all the medical care that they could want.  However, when questioned in a survey which life extending interventions they would choose if faced with an end stage disease, including IV fluids, antibiotics, enteral feeding, artificial ventilation, and other aggressive interventions the physicians chose none of the above. .  They tend to go serenely and gently.

Written directives can give patients far more control over how their lives end. But most Americans’ fears of death keep them from making proper arrangements.

There is a better way. 

1. Start early and determine the wishes of your loved ones (and yourself) for end of life care. 
    The document “Five Wishes” provides an excellent guide for this discussion:

    http://www.agingwithdignity.org/forms/5wishes.pdf

2. Make sure there is a health care agent appointed who agrees to abide by your wishes

3. Learn about hospice before you need it.  A good starting point is Hospice Foundation of America

    http://www.hospicefoundation.org/pages/page.asp?page_id=171417

    Or easier still, contact your local hospice.  They will be glad to speak with you and send
    you information

4. When in doubt, call a hospice.  Explain the situation.  Ask for a hospice evaluation.  They
    will provide guidance. The worst case is that your loved one does not yet meet criteria,
    but a hospice nurse will check back at a later date to re assess. 

5. Carefully question all aggressive medical interventions when a person is suffering from a
    late stage disease. These may indeed be futile.

6. Ask a doctor what he/she would do if it were his/her loved one.  And demand a real answer.

The most important decisions regarding how you spend your final months should not but made in a moment of crisis.  Know the options.  Document them. Appoint someone who shares your views and is committed to honoring then as your agent.  Be an informed health care consumer and good advocate for your loved one.  Choose hospice/palliative care.  You will not likely regret it.  No one does.

http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html
http://www.ipcrc.net/pdfs/media_watch/Suppl.2012.03.05.m.w.n243.pdf