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Hospice Care/life-sustaining measure under hospice care

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QUESTION: Will tube-feeding and ventilation be continued under hospice care?

Will medication for the control of parkinsonīs symptoms be continued under hospice?

How are severe infections handled under hospice care?

ANSWER: Hello, Marilyn--

These are excellent questions!

If tube feeding is needed and desired, and particularly if it has already begun, it will be a part of hospice care.  We would not stop feeding someone because they began to receive hospice services, and this is the same thing.

If ventilation has already started, you can expect it to be continued in hospice.  There is a bit of a rub: if the hospice diagnosis--the diagnosis for which hospice care is being sought--is the same as the one for which the ventilation is being provided, the hospice will be required to provide it, unless another option is available (client's own funds, a donation, etc.).  This is a problem for hospices, because ventilation is costly and hospices are reimbursed about $150 a day to cover everything: medications, nurses visits, aides visits, supplies, hospital beds, everything.  So many hospices decline to accept a patient on a ventilator, when that ventilator will become their responsibility.  They simply cannot afford it.

That said, if the hospice diagnosis is something else, say Parkinson's disease, and the ventilator is there for COPD, then whatever coverage is paying for the ventilator and COPD related care would continue to provide that service, and the hospice would take over the costs of caring for the needs related to the Parkinson's disease.

Medication for control of Parkinson's symptoms would continue, since a) this is symptom management and comfort related and if the referral to hospice is made for Parkinson's, then it would fall to the hospice to cover that expense.  This is expected: to pay for a patient's pain and symptom management is the hospice agency's responsibility, so long as that is the diagnosis for which the referral to hospice was made.  There is one exception to this rule: if the patient is referred to hospice for cancer, and there is pain for any reason at all, the hospice will cover pain management medications.  Even if that patient falls and breaks a leg, and the pain is from the broken leg, in the case of cancer patients, that pain will be taken care of by the hospice agency.  But for all other diagnoses, the hospice is responsible for managing the symptoms related to that diagnosis only.

Anything else is will be covered by the insurance (Medicare, Medicaid, private insurance) according to the provisions of the policy.

Severe infections: one is almost never referred to hospice for infections, and so medications to control and hopefully cure infections would be very much the plan.  There are a few exceptions.  Recall that in hospice, the patient must agree to give up on a "cure" for his or her disease (the one that they are receiving hospice services for).  So if a patient develops an infection, that infection will be treated just like any other infection EXCEPT if the patient and family determine that it is putting of the inevitable, and then the infection might not be treated but comfort would still be very important.

I had a patient who was fairly young (in his 50's) and who developed dementia.  He was aware, he knew his family but he was no longer able to get up and about, he was always confused--and his dementia was the reason he became a hospice patient.  He had infection after infection.  We treated them, and we also taught him and his wife that more than likely when his death came, an infection would be involved.  They understood this.  After we managed to clean up an infection, the patient's wife (who was his medical power of attorney) told us that the two of them had talked about it and decided that the next infection, they did not want antibiotics.  Sure enough, in two or three weeks or so, here came another infection, this one was pneumonia.  We offered antibiotics, and they politely refused.  We kept him very comfortable, his family came to see him, and after a few days he drifted off to sleep, and soon after he died.  I have also had patients who received blood transfusions, antibiotics, all sorts of things, because this was their desire AND because their hospice diagnosis was something other than the anemia or infection or whatever.

Hospice doesn't mean an end of care.  It means an end to fighting for a cure.  Very little changes, except (oddly enough) many people seem to feel better and regain some of their health when hospice begins.  Some think it may be because so many treatments and medications themselves can make us feel worse, so when those are stopped, the patients feel better.  It is also thought that the more personalized the care, the more frequent the care of nurses and aides, and the relief that the patient and family feel because they are more in control, all of those things add up to a better quality of life.  And that is the point of hospice: to have a better quality of life, for as long as life will last--peace, pain free.

I hope I have helped answer some of your questions.  Please feel free to write again if you have more.  I am sorry you or someone you care about is so ill as to be considering hospice, but I am glad that you know hospice is there.  I pray that everything works for the best and you receive the support you need and deserve.

Peace--
Christine

---------- FOLLOW-UP ----------

QUESTION: The patient involved has several conditons which would qualify him for hospice and the question of hospice has been posed in the clinical setting.  The patient can no longer express his wishes and at the moment is being treated for several life-threatening conditions. If there are multiple qualifying diagnoses, Parkinsonīs and dementia, for example, what criteria are used  for hospice referral?

ANSWER: Hello again--

The criteria for hospice in general are that the person's disease or condition is likely to end his or her life in six months or less, if efforts toward a cure are stopped AND the patient must have decided not to pursue care leading to a cure.  So a cancer patient would stop chemotherapy which was aimed at a cure and would have to have disease sufficiently advanced that death is likely to come in six months or less, in order to qualify for hospice admission.

Admission into hospice requires a physician's order, and the physician's order will state whether it is his/her opinion that the patient has six months or less to live.  It comes down to that physician's opinion.  Rarely, very very rarely, will a hospice say, no they aren't far enough along yet.  In fact, I have never heard of that happening.

Your brother in law (I gather that is the relationship) can no longer express his wishes, so (and I acknowledge I'd have to go to the books or ask a hospice physician for specifics) it does sound like he would most likely qualify, if that is what his wife or MPOA (medical power of attorney) wants and/or knows he would want or maybe the patient told the MPOA/spouse back when he could express his intentions.  If he wrote out his wishes for how he wanted to be cared for at the end of his life, so much the better.

Normally only one diagnosis is used for the referral.  This is in part because it is too expensive for the hospice agency to try to cover all of the terminal illneses if there is more than one (and it sounds like maybe there is), and generally there is another source for care, so the remainder of the illnesses are managed by that source.  Hospice usually just takes on one terminal diagnosis, in the even there are several.  That said, if they are in the home and the patient has an issue related to a different diagnosis than the actual hospice diagnosis, they will attend to the patient's needs and help arrange to get meds, etc.  I have done that, and I think most hospice nurses have as well.  We are still nurses--we still see the patient as a whole person, with complicated conditions that intertwine, in the family with its issues as well.  We do strive to address everything--and to delegate and refer when it is appropriate for us to do so.

In the case of dementia (and possibly Parkinson's), there are sets of criteria, which hospice agencies use, to determine whether the person's condition has progressed sufficiently that hospice is appropriate.  They look for things like being able to smile or speak or raise their heads independently.  I did know of a hospice that admitted a woman who was walking around and talking, she couldn't take care of herself, required help with showering and hygiene kinds of things, and she could tell a joke--in fact, she told the same one over and over again, and thoroughly enjoyed it each time.  She made passes at the hospice chaplain!  Personally, I did not think she qualified since we should have been looking at whether she could smile!  So that woman was admitted to hospice and received services.  (And my input into the matter was somewhat less than appreciated....)

So I'd think the patient in question should be a shoo-in.

I hope this has helped some.  Please write again if you have further questions.

Peace to you and yours,
Christine

---------- FOLLOW-UP ----------

QUESTION: Hello Christine.  One last question, as a person only related by marriage to the patient, but as one of only two people involved in the decision process, when or how, in your personal professional opinion, can one deal with the denial and anger of the caregiver?  How much advice is too much...Should one wait until the realistic situation is finally acknowledged? While I realize this is a difficult question, as each situation is unique, perhaps you have dealt with this issue before and can offer some advice.  It is difficult to watch two people suffer so much. And a solution must be found very soon.

Thank you.

Answer
Hello Marilyn--

You ask the best questions!

I have met only a few families where no one was in denial and everyone was in agreement.  The down and dirty answer, so to speak, is to push for the comfort of the patient, with or without hospice.  Any physician can order "comfort care," which doesn't mean stopping anything, it means providing comfort in addition to whatever is being given.  Pain medications, anti-anxiety meds, anti-nausea meds are at the top of the list.  There are other meds for other issues.

One thing to consider is, after your brother-in-law has died, you want to keep your relationship with your sister.  Some families carry out their emotions to such an extreme that after the patient has died, the family is fractured and never reunites.  That would be a very sad outcome.

I would suggest that you tell your sister about this site and perhaps she could read our interaction.  Or, you can talk with her about her husband's condition, what can be expected (I'd consult with his physician, together if possible, so you both have the same facts), and how best to make his journey as comfortable as possible.

You mentioned that he can no longer express himself.  It may be helpful to know that when in doubt about pain or anxiety, hospice assumes that there is a need to medicate and will do so.  There are guidelines for how much medication to give, often based on weight but not always, and signs that can indicate that the patient needs a little more.  These things are known to any provider of "palliative care," so, again, he can have this care if a specialist in palliative care is added to his collection of providers.  This is usually more easily accomplished if he is in a hospital or nursing home, but is not impossible if he is still living with his wife (how ideal would that be?!).

I do think if you wait until reality sets in, your brother-in-law will most certainly have some amount of suffering which could have been prevented.  Sadly, palliative care isn't something physicians automatically think of, typically.  They are aimed at cure in their training, and we look to them to solve our problems.  Dealing with the end of life seems foreign.

You mention that hospice has been mentioned in the clinical setting.  That sounds like his physician has broached the subject. Yet I gather his wife was unable to accept that.  If this is the case, I think I'd approach a compromise--have palliative care, plus whatever the doctor suggests that is of a curative nature (cannot think what that would be, at this point), and perhaps that will help her move toward formal hospice care.

It is heartwarming that you have such love for these two.  I hope you are able to help them reach a point where his symptoms are managed and he is comfortable, and she knows she is doing the best for him, when it seems there is so little left to do before the inevitable becomes reality.

Peace to you--I hope I have helped.  I know you will write again if there is anything I more I can do.

Christine

Hospice Care

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Christine Johnson

Expertise

I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.

Experience

I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

Organizations
HPNA (Hospice and Palliative Nurses Association)

Publications
none yet

Education/Credentials
Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

Awards and Honors
Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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