Anyone have experience with hospice?

A very close family member is in the final stages of dementia/Lou Gehrig's disease. We (my family) are seriously consider hospice care. Does anyone have experience with hospice? Can you still seek treatment for concurring issues like arthritis during hospice? Does the hospice physician trump the current primary care doctor? Do you have to make an immediate decision for end of life care? Does the patient and family members still have control over medical decisions? Have your experiences been positive or negative? Would you recommend hospice?

I am so sorry to hear about your friend. We worked with hospice during my father's final weeks and I have had other encounters with them in the passing of other family members as well. I would highly recommend that your friend/their family at least look into it and see if what the hospice where they are is something they feel can help them.

Hospice is there to help the patient and their family through the process -- help, not control. Yes, the patient (and their designated persons and doctors) still maintains control over the decisions. The timing of the decision making needs to be based on the patient's condition - some situations are more pressing than others. My encouragement would be to have some conversations now so that everyone is on the same page as to what the patient wants, or thinks they want, and then revisit the issue periodically - because sometimes what you think you want changes. The goal of hospice care is to maintain comfort - so treatment for other issues that would contribute to that comfort should be part of the care plan. The key thing is for there to be open communication - that means having some conversations that may be difficult - because the only way to be sure the patients wishes are followed is for people to know the patients wishes. Those conversations need to come with putting things on paper -- a properly filled out directive can sometimes become key as the end of life can often bring out a surge of emotions and this can lead to those who love the patient to feel compelled to try to override the wishes of the patient - if the patient is in a state that makes them unable to speak for themselves at that point it is important that their wishes have been recorded so that they can be honored. Death is a situation that can bring about conflict among those that love the one who is passing and having things understood ahead of time can help to avoid that.

Thank you.
It's actually my mother who will be getting the hospice care.

DianeB said:

A very close family member is in the final stages of dementia/Lou Gehrig's disease. We (my family) are seriously consider hospice care. Does anyone have experience with hospice? Can you still seek treatment for concurring issues like arthritis during hospice? Does the hospice physician trump the current primary care doctor? Do you have to make an immediate decision for end of life care? Does the patient and family members still have control over medical decisions? Have your experiences been positive or negative? Would you recommend hospice?

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I was a hospice nurse for almost 4 yrs, at the end of my 20 yr career as a nurse, so you could say I have some experience there. Different hospices have different regulations, with those operating as a non-profit organization having more leniency on the rules than those that have to adhere more to insurance rules.

Some will only advocate further treatment for other illnesses on a palliative basis but not for extending life....meaning, if it increases quality of life by relieving pain or nausea or other physical discomfort. The hospice meds usually take care of most pain and nausea issues, so seeking NSAID pain meds for arthritis isn't something we see too often.

Usually the hospice physician only handles maladies related to why the person is on hospice, so any other additional treatment can be referred to the primary care physician.....but the hospice doc has the final say on those meds and treatments he is in charge of. If it gets to be a battle of conflicting medical advice, the patient is usually taken off hospice.

Being on hospice usually means the patient has had a diagnosis for being end stage of a terminal illness and they could expire from it within 6 mo. or less. Committing to hospice care usually also means that one is going to "comfort measures only" on their end of life care. If they want antibiotics or to go to the hospital for worsening symptoms or related illnesses, sometimes a hospice will allow this a few times but usually they will want to review with the patient and family what their goals are....extending life or comfort measures and a natural progression of the illness? If they want to continue to take measures to extend life, then the patient is usually taken off hospice.

The patient and family always have control over medical decisions...but they have to realize what that control may entail. If the patient and family want to continue life saving/extending measures while being on hospice, the insurance companies will either authorize one treatment or the other but they usually won't pay for both services~both curative and end of life/palliative only. I've seen folks get by with it a few times but usually the insurance will refuse payment to hospice~they even have to be discharged from hospice care if they are admitted to the hospital for X number of days~while the patient is seeking curative treatment, so hospice services are then withdrawn.

I would highly recommend hospice to anyone...it was my very favorite nursing job and I've had a truckload of nursing jobs~pediatric home health, oncology, subacute care, subacute ventilator nursing, extended care nursing, temp nursing, office nursing, urgent care nursing, etc.

In hospice the patient and family actually have MORE control, more hands on care and more time in a peaceful home setting than they do with any other kind of nursing care. The staff that care for the patient aren't in a hurry, they have more autonomy in their work so are generally more satisfied and less stressed as they go about their day, they can work on individual careplans for the patient that suit their situation better than in a facility, they have a social worker and chaplain services that come right to their home, their meds are delivered to the home and so are any supplies they will need~hosp. bed, O2 tanks and equipment, pain pumps, personal care items, etc., they have their own aides that come to the home and can give respite to the home caregiver...the aides will do bathing, light housework, laundry, etc.

The hospice I worked for allowed us to stay at bedside throughout the whole dying process, though most hospices I've heard about do not do that...the nurse merely comes to the home after the patient has died to pronounce the patient's death. Staying throughout the process and being able to address each new symptom that arises of the active dying can help families tremendously...the sights and sounds of a dying person can be disconcerting to some and downright horrifying to others.

Yes, I'd recommend hospice. I've seen some amazing things happen during my time in hospice, amazing love shared and witnessed that would be hard to achieve when a person dies in a hospital.

DianeB said:

A very close family member is in the final stages of dementia/Lou Gehrig's disease. We (my family) are seriously consider hospice care. Does anyone have experience with hospice? Can you still seek treatment for concurring issues like arthritis during hospice? Does the hospice physician trump the current primary care doctor? Do you have to make an immediate decision for end of life care? Does the patient and family members still have control over medical decisions? Have your experiences been positive or negative? Would you recommend hospice?

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We as a family did choose hospice for my step Dad big swede Ma and I both small farm type strong but no
match... Most hospice there is not much decision left when they come in ours was very positive and yes all meds where still given through out
he was diabetic a pain killer was added at last.. Check state laws where you are regarding also their insurance ..... Godspeed

DianeB said:

Thank you.
It's actually my mother who will be getting the hospice care.

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I am so sorry - I misread our post at the beginning. You, your mother and your entire family will be in my thoughts in the times ahead.

Did everyone have 100% fantastic experiences? No issues at all? I feel like we are being made to change everything to accommodate those at hospice. That my mother's happiness and dignity are secondary.

DianeB said:

Did everyone have 100% fantastic experiences? No issues at all? I feel like we are being made to change everything to accommodate those at hospice. That my mother's happiness and dignity are secondary.

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Then choose a different hospice, no it should not be difficult yes different but
not tough there are those connected with churches her happiness, dignity is
tantamount

I am sorry to hear about your mother. Both my mother and father benefited from Hospice care during their final days. My mother had Alzheimers and died in a nursing home and hospice was a comfort to my father and me during the two and a half years she was there. (My mother was beyond caring). A few years later my father had hospice care at home. (He had cancer and dementia and by then I was living with him)

Before hospice my father was in excruciating pain. Within 24 hours under their care he was pain free. At the time, hospice required a doctor's opinion that a patient had less than six months to live and my dad's very nice doctor signed off on it. The Hospice team included a chaplain, a social worker and a nurse who came to the house. The nurse made sure my dad was comfortable and addressed any medical problems. The social worker and chaplain were my support in a very difficult time and I don't know what I would have done without them.

I will be forever grateful to Hospice for being there for me and my family.

My thoughts are with you.

DianeB said:

Did everyone have 100% fantastic experiences? No issues at all? I feel like we are being made to change everything to accommodate those at hospice. That my mother's happiness and dignity are secondary.

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It really depends on what the issues are where you feel this is becoming a problem -- certain things are going to be pretty standard regardless of the program, but other areas are going to be where you may find some variability from one program to the next.