People don’t understand end of life care. People especially don’t understand end of life pain management. “People” includes lay persons, but also health care professionals.

Dying is not a medical event yet it is looked at and often treated medically. Dying is a social, communal, emotional event. Yes, there are medical facets to dying--nutrition, hydration, symptom control, and pain management. BUT they are not dealt with in the same way as it is for people who are going to get better.

Because of lack of knowledge, pain management, under Hospice care, has become an area of confusion and misunderstanding.

Dying is not painful---disease causes pain. There are diseases that have no pain associated with them. There are a lot of diseases that people die from that do cause pain, pain that is often difficult to manage. The type of medication, the adequate dosages, the changing disease pattern, tumor growth and location, all affect pain management at end of life.

To all of the above add fear and the late arrival of patients to the hospice program. Our culture, in the midst of an opioid crisis, has produced a lot of fear surrounding those people who legitimately need narcotics.

About a third of Medicare hospice patients are on service for seven days or less. Because of the late arrival family education becomes condensed into a few days and family absorption of the information we are trying to teach doesn’t always happen. As a result hospice ends up with families believing “hospice kills”, and “Mom was fine until Hospice gave her morphine”.

SO ----- LETS EXPLORE THIS

Those patients that arrive onto the hospice program with seven days or less to live are in what I call “labor”. They are sleeping with their eyes partially open, picking the bed clothes, restless, generally agitated, talking to or about people or situations that we cannot see. They are not going to be able to tell us if they are in pain.

Pain management is different in the last seven days because the body is not functioning in its normal way. Circulation, breathing, oxygen exchange are not happening properly so medications are not being absorbed and carried throughout the body in a normal way. Nothing in the body works “right” so medications won’t work “right” either.

First, we look at what their disease is and what has been their disease history. Was pain a part of their history? If it was hopefully they are already, and have been, taking some form of pain medicine. If it is oral and they can no longer swallow on command, get an equivalent dosage in liquid and give it under their tongue or insert it in their rectum.

Now you observe the patient. Do they appear unduly agitated? If they are a danger to themselves in their agitation then Ativan or Haldol would be appropriate with the pain medicine.

You may have to increase the dosage of the pain medication the person has previously been on because of the challenge of distributing it through out this nonfunctioning body.

If pain has not been part of this patient’s disease process then they are probably not in pain now. Remember, dying is not painful, disease causes pain. Observe how restless they are. Does body language indicate there is an area that is more uncomfortable than any other? Is there moaning? These may be indicators that for whatever reason this person is now in pain.

If you determine there is pain even though there is no disease history of pain that doesn’t mean you have to jump right into a narcotic. Maybe Percocet (or its equivalent) or even Ibuprofen may bring comfort. Narcotics should not be our first line of pain management anywhere in the disease process. That said, there are always exceptions.

IV fluids with morphine will increase lung congestion and actually make dying uncomfortable. Generally there is no reason to use IM or IV injections during the days to hours before death.

In end of life care we just can’t make one size fits all statements. Pain, as well as individuals, are just that, “individual”. We have to observe and make decisions on each person, their disease and how they are responding and reacting in their disease.

Something More about... Are Narcotics Necessary for the Dying?

When hospice, palliative care and home care staff use my booklet PAIN AT END OF LIFE, medicare requirements for consistent family education are met. After reading the booklet with the family, or having them read it while charting, family fear is greatly reduced and CAHPS scores rise. Chart that the book was provided and read. There may be sections that need to be re-read on subsequent visits.