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Hospice is Life

The best care possible

Déjà vu.  I am with the family of a patient who has terminal cancer and we need to discuss end-of-life planning.   We are setting the base before we all meet with the patient, so that questions and concerns can be handled and perhaps avoid conflict.  Everyone understands that the disease is advanced and that further chemotherapy is not indicated.  We all agree on pain control and comfort care. However, when I open the discussion of how we are going to get the patient home, a family member says, “do not use the word hospice, that means death.” 

Now, I am not without empathy.  I know that bringing hospice into our discussion says that a problem is present from which the patient will eventually die.   That is a tough idea.  The problem is that many people confuse hospice with accelerating death.  They think only of morphine drips, stopping needed medicines and starvation.  This common reaction still surprises me.  For I believe hospice is life. 

If a patient has a terminal illness for which there is no reasonable treatment, our goal should be to bring quality to the time that remains.  It is vital to understand that the end of life is not about being dead…. the end of life is about living.  If we can control pain, shortness of breath, anxiety and other disruptive symptoms, than there is much to be lived, even in our final days.  We can learn, teach, share, give and love each other.  Who better to guide a grandchild about what she wishes for the child’s future, than the grandmother?  Obtaining quality, comfort and dignity at life’s end is the goal of palliative care and hospice.  With terminal disease the fact of coming death is decided, but the opportunity to live well must be seized. 

There are several reasons for the confusion regarding the true goals of hospice.  First, superficially, most people who go on hospice do indeed die.  Therefore, from the outside there may seem to be a cause and effect relationship.  I.E. Go on Hospice …Hospice makes you die.  It may be difficult to see that the patient is living better and perhaps longer.  Second, we often delay in calling hospice to the very end, when things may be desperate with symptoms out of control.  I cannot count how many times I have seen hospice called during the last two days of life.  Then hospice can have relatively little benefit and may in fact have to be very aggressive with medications just to achieve comfort. 

I think we can be confused by the legal Medicare Hospice requirement that an estimation of life less than 6 months must be made for a patient to enter hospice. It is important to understand that the 6 months can be renewed without limit.  Occasionally I have seen patients on hospice for more than a year.  Not infrequently "terminal" patients given the quality and support of hospice actually regain their health enough to leave hospice.  Some of them live for years after, or are healthy enough to resume active cancer care if needed. 

Finally, I think hospice is confused with death because of the way in which we handle these conversations.  Instead of planning when we are relatively well and have time to discuss end-of-life from a perspective of health, we wait until the last minute.  Then, as everything is deteriorating we suddenly have to mix statements about failing therapy, progressive disease, limited prognosis and terminal care, all at one time.  Thus, we take a short hop from, “you are doing fine” to, “let us talk about hospice.” 

Hospice can give weeks or months of quality life to a patient and family.  In addition to controlling symptoms hospice helps with planning and coping.  In this difficult time hospice acts not only as caregivers, but as guides.  This can increase the patient’s independence and assure dignity during this part of their life.  Remarkably increasing data shows that instead of treating a terminal patient with failing chemotherapy, if you just control symptoms the patient will not only live better, but significantly longer. 

Hospice can be a tremendous assistance and gift to a patient and family, going through an end-of-life experience.  It provides hope for comfort, quality and dignity.  It brings people together.  This is precious time, which can be lived well.  Life giving hospice can help.

 

As published in Sunrise Rounds.

 

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James Salwitz May 21, 2012 at 05:32 PM
I am happy to hear your parents are having the freedom and dignity they deserve at this time of their life. I think the point you add to my blog is the control which hospice gives to patients and their families. Thanks, jcs
Ryan S May 24, 2012 at 07:10 PM
As Executive Director for a hospice company, these are issues we are constantly educating the public and physicians on. So many physicians see the hospice discussion as too difficult, or are afraid of what the family will say. Hospice is a great gift when its done well, and there are so many benefits; financial relief, emotional support, access to nurses 24 hours day, and ultimately, dignity at end of life.
James Salwitz May 24, 2012 at 07:17 PM
Amen. Thank you for your good works. jcs
stella nieves May 27, 2012 at 04:26 AM
I don't mean to be naive but what is the difference between palliative care and hospice? My Sister is in stage 4 Cervical Cancer and her Oncologist told us they can treat the cancer but they can not cure her and she may not make it until the end of summer. She is in her second round of Chemotherapy and I notice her getting stronger and she seems to feel much better. He has listed her as a palliative care patient.
James Salwitz May 27, 2012 at 04:33 PM
Hospice is care given in the last part of a persons life when the only goals are to provide comfort and quality. Often this also results in extending life. Hospice does not treat the medical problems which are making the patient ill, just the symptoms. Palliative care is active medical care which is designed to give quality and comfort and perhaps extend life. A palliative care approach might include actually treating the primary disease (like chemotherapy for cancer) or complications (like antibiotics for pneumonia). Thus your sister is receiving palliative chemotherapy because the oncologist believes that this is the best way to give her quality life. If things change and the oncologist does not believe chemotherapy can help her to feel better, than the oncologist might suggest a pure hospice approach (no chemo, and only treat her symptoms). Often we change from palliative care to hospice when we are concerned that any medical intervention will increase suffering and we want to clearly focus on quality and comfort. jcs

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