So, this statement is really the source of a lot of frustration for me. First of all, I have to ask “Who is every ready for hospice”. So many times I meet families in the hospital, the home, the MD office or the clinic who say these words to me. So let me share the back story….
I receive a call or a fax from a physician, a case manager or a social worker notifying me that they have a patient who needs to be evaluated to see if they meet the criteria set out by the Centers for Medicare and Medicaid Services which indicate a terminal prognosis within 6 months. That means that by looking at the history and physical, the lab work, the diagnostic test results, the patient functionality, the recent changes in appetite, activity intolerance, cognitive decline, number of hospitalizations, infections, falls and response to any treatments tried, it is clear that a patient is in decline. Not only is there decline, but if the disease continues as history and research have shown that it will, the patient will not live beyond approximately 6 months.
That is a ton of objective data. A ton. And so much research has gone into identifying the tipping points of each of these pieces of information that predicting the prognosis is very, very accurate. Now, there are scholarly articles out there that critique the criteria used to determine prognosis but if one reads carefully, they are critical that we cannot predict shorter time frames very accurately. They do not refute the accuracy of the 6 month window on prognosis.
So when the physicians in the hospital, clinic, doctor’s office come to a family and say ” I think it is time to consider hospice”, they are not just swagging it. No MD in his right mind would make this statement unless there were many indicators that a patient has reached this moment.
Lets talk about how treatment options plays into this. When an MD approaches a patient to say “I think it is time to consider hospice” he/she has carefully considered three more indicators that go along with the data mentioned above. The MD looks at:
a. How is the body tolerating current treatments. For many patients, the treatments are much more dangerous and damaging than the cure. Here are some examples:
A cancer patient whose chemo has virtually destroyed all the red blood cells, suppressed the immune system beyond safe levels and who is extremely sick from the most recent chemo or radiation treatment.
Or a dialysis patient who could not complete the most recent session because they “crashed” in the middle of it, dropping their blood pressure, heart rate and maybe even lost consciousness.
b. Are the treatments still working or improving the patients condition overall?
A congestive heart failure patient or COPD patient who has been in the hospital 3 or four or more times in three months because they can’t breathe at home (even with oxygen), they can’t walk to their bathroom and they are short of breath while sitting down or lying down. They already have stents, they already take a ton of cardiac and pulmonary meds at home. This patient comes into the hospital, gets aggressive medications to get fluid off, get breathing back to a tolerable state (but usually not comfortable without oxygen while doing daily activities) and then goes home-only to return again in the same shape if not worse.
c. Does the patient even want to try more treatments?
A stroke patient who does not want to do rehab anymore because it just exhausts them and they don’t get any stronger. In fact, they get weaker, more tired and more disheartened.
A cancer patient whose chemo and radiation make them so sick they just want it to stop.
On top of all this, so many physicians would rather keep trying treatments if there is even a 1% chance of some type of cure or improvement of quality of life and even if the side effects of the treatment are horrible. MDs are taught to fix things at all costs. They have a very hard time admitting defeat to a disease or illness. They feel personally responsible for “failing” the patient. And, they are not in the patient’s body, living the experience of the treatment. So given even the smallest window of opportunity, they will treat and treat and treat.
So why, when an MD comes to a family and says “I think it is time to consider hospice” does a family think “We are not ready for hospice”?
OK, don’t flood me with responses. I know the many, many answers. I am just hoping to help someone think more carefully when face with the doctor’s statement.
So “We are not ready for hospice” happens for a lot of reasons:
a. No one has directly and clearly told us about the progressive nature of the disease and that the we will reach a point where there are no more treatments left and the we are not going to get better. Lots of healthcare providers stink at this conversation. I once heard an MD tell a family of a patient with on a ventilator, requiring 3 medications to keep the heart going and the blood pressure up that the patient was “stable today”. Imagine the confusion then, when the hospice team came in to talk to the family.
b. Society has skewed our idea about how long we should live. I mean, how old does grandma have to be before accepting that it is time for her to die is ok? I have seen 99+ year old patients in the hospital, barely breathing, eating nothing, lots of pressure wounds from being bedbound whose family will not sign a do not resuscitate order to let her go peacefully when her heart stops and she stops breathing.
c. We somehow have forgotten that being alive and living are two different things. We forget that the patient can no longer do any of the things that made them enjoy being alive. This happens with patients on a ventilator for months with no brain activity except that which keeps the heart going. Yes, they are alive. They will never leave the hospital. They will never garden, have a glass of wine, see a play, hug a child again but the family will not extubate.
d. We mistake our own fear of losing a loved one with our duty to the patient, our need to avoid grief, our ethical and moral responsibilities to the patient. Families say “we just feel like we have to do everything possible to give XXXX a chance”. Really, if XXXX had a chance, your MD would be taking it for sure.
e. We have adopted a TV mentality regarding the miraculous cure when in reality it is rare if not non-existent. Additionally, we mistake the prognosis of the young patient as appropriate to the older, more frail, less generally healthy patient. Many people have said to me “Well my husband’s brother had this same thing and he is doing well.” or “I heard about someone who woke up one day and they didn’t have the cancer anymore….” Well, I heard of someone who made wax wings and flew up to the sun……
f. We have an unrealistic idea of how many times we can “bounce back” from a health crisis. Just because dad had good results after his first stroke does not mean that he will with this one 15 years later. He has aged, his other health issues have advanced……
g. We actually believe that our MDs are quacks if they “give up” or give us bad news when in this day and age, they consult with multiple peers before reaching the conclusion that there are no more measures to take that have a realistic benefit or that will not hasten death. Family members and patients want a “second” opinion from a complete stranger after years of trying treatments with one MD they know well.
h. We are immature and cannot handle the reality of the human condition: we will all pass away at some point. Period. Yes its sad, terribly painful but does that justify making someone else suffer longer because we will be sad if they pass?
No one is ever ready for hospice, every ready to die. BUT IT IS GOING TO HAPPEN. Hospice doesn’t make it happen. The disease process makes it happen. Hospice gives the patient and family the opportunity to have help and support when it happens, choose where it happens, how it happens, how comfortably it happens.
So when and if they time comes that the MD says “I think it is time to consider hospice” actually you are ready, whether you want to admit it or not.