Dear Barbara, I am having a very difficult time providing care for my father as a critical care nurse. I almost lost him to pneumonia . My agency insisted he not be treated and taking him to ER would cause them to revoke hospice. He was treated with levaquin and his quality of life is much improved. Who is right? Treat an infection or just let him die? He asked for treatment.
The operative words here are “He asked for treatment.” That is your
answer. Our responsibly as health care workers and I will argue that it is
also the responsibility of family, is to provide the treatment or lack of
treatment a person wants, to respect how a person wants to live and how a
person wants to die. That is why Advance Directives are so important. It
tells everyone what you want if you can’t speak for yourself and it also
reaffirms what you want even when you can speak for yourself.
The problems (and there are several) generally lie in a person not having
an Advanced Directive, in people thinking they know what is best for others,
with family members not reconciling with the approaching death, and in
healthcare professionals concentrating on keeping a body just breathing
(treating physical conditions and not looking at the whole person, the suffering
caused, and for what end?).
When a person accepts the Hospice Medicare Benefit it is because the
person is physically at a place in their disease that cure is no longer
considered possible, that in a physician’s opinion the person has less than
6 months to live and that the patient is interested in comfort care for the
family and themselves. They have accepted the notion that treatment is not
the best option in addressing their physical condition. These circumstances
and Medicare regulations put a Hospice agency in the position of having to
say if you go to the ER and seek treatment you will not be eligible for
Hospice services. Hospice is bound by Medicare Hospice regulations and
rules.
The philosophy of hospice end of life care is to assist those people who
have reached a point in their disease process that cure is no longer
possible. The philosophy is to provide comfort to the patient and support to
the family during the last months through hours of life. Therefore---if
treatment is sought, (treatment that will possibly prolong life) the person is
considered not appropriate for hospice services.
Now, all this said, there are thin lines and points to debate, in what is
treatment to get better and treatment for comfort. Is pneumonia related to a
life threatening illness or is it a separate disease not related to the condition
that is the cause of approaching death? Is pneumonia really a very gentle
way to die and the “old man’s friend” as so many say?
What we do know is pneumonia left untreated in the frail will probably result
in death. If a person is dying (they are on hospice therefore considered to
be dying) and they develop a condition that may result in death what is the
advantage in treating that condition? I have seen legs amputated and heart
surgery done in people with a severe life threatening illness unrelated to the
surgeries. “Why” has always been my question. What was accomplished in
doing surgery to amputate a leg or perform open heart surgery on a person
with end stage cancer other than further suffering? These two incidents
actually hastened death along with increasing the suffering.
So back to your question of treatment or no treatment as end of life
approaches---the right answer is to do what the patient wants done. It is not
really for the family or the physician to decide. It is the patient’s choice.
Confusion comes when no one knows what the person wants.
Something More... about Pneumonia, The Old Man's Friend...
When a family is clear about what their loved one's wishes at end of life are, everyone is more relaxed. The care is different. There aren't any "what-if's", secrets or confusions. Have the conversation. Write your Advanced Directives. Do it for each other. I have information and ideas in The Final Act of Living.
