The pain is bad . . .

I’d like to begin a series of blogs that answers some of the common questions about hospice.  There are many myths, such as, hospice is only for cancer patients, or, hospice is a place.  Let’s start this week’s blog with a few thoughts about continuous care.

Continuous care is a hospice industry term that describes the near continual presence of a hospice clinician at the patient bedside.  For the right situation, this service is just the right treatment.  Examples are episodes of crisis, usually uncontrolled pain, or nausea, during which the patient is requiring frequent administration of medication.  We have had a number of our patients benefit from continuous care.  Usually they suffer from cancer that has spread to the bone- very painful, but quite manageable with the right staff and medications.

Often we are asked to provide continuous care to a patient when s/he is actively dying, i.e. in the last few hours of life.  According to medicare guidelines, a patient who is actively dying, but is comfortable, does not meet criteria for continuous care.  That fact catches most people by surprise.  It did me when I first learned of it.  What about dying alone?  Again, if a patient is comfortable, medicare will not pay for hospice to provide a continual presence at the bedside.

The key to understanding is to scrap the term continuous care, and replace it with “Crisis Care.”  We can be persistently at the bedside only when there is a symptom crisis requiring us to be there.   Here are the guidelines for Crisis Care as written in the Hospice Training Manual, provided by Palmetto, the medicare intermediary for our part of the country:

· Continuous home care should be provided only during a period of crisis as necessary to maintain the terminally ill individual at home.
· A period of crisis is defined as a period in which a patient requires predominately nursing care to achieve palliation or management of acute medical symptoms.
· If a patient’s caregiver has been providing a skilled level of care for the patient and the caregiver is unwilling or unable to continue providing care, this may precipitate a period of crisis because the skills of a nurse may be needed to replace the services that had been provided by the caregiver.

So, when the pain is real bad, continuous care is part of our services that can get symptoms under control very quickly.  It can step in for a day or so while the family rests, and it can prevent hospitalization.  All good.

If you are reading this blog and hospice is a new concept for you, you might wonder, “If hospice doesn’t normally keep someone at the bedside, what do they provide?”  It is a good question.  Remember that hospice is a concept of care whose goal is to relieve suffering at the end of someone’s life, and to provide social/chaplain services to the patient and family.  From a purely medical standpoint, we deliver, via home visits from physicians, nurses, aids, chaplains and social workers, the knowledge about medications and equipment that control symptoms.  We initiate the care, and then teach family caregivers how to use it.  Then we  come along week to week, and often, day to day, to support the patient and family.

The results are amazing.  Over 99% of our patients and families communicate high praise to our team members.  Last year in our country, almost half of the deaths were overseen by hospice.  That is up 50% in ten years.