no provision for continuous home care

[nurseebol]

I have a patient with intractable terminal agitation. The family does not want to use respite, as they want to keep them at home. They do not want to hire caregivers because of liability concerns. They trust us-hospice. However, I am told we do not have the manpower to provide continuous home care. From my research and talking with a few others I found out that this level of care is SUPPOSED to be offered (see quote from about.com). I feel as though this family should have this benefit, but if I open my mouth I will lose my job or have some type of issue. I love my job, but this is weighing on my mind. The guilt is horrible when I leave, but I have to go home to my family. I have considered staying for several hours on my own time, but this isn't how it should have to be. Any thoughts or suggestions? I know if I told this family about this, they would raise the roof to have the benefit, but I am sure I would be found out as putting them up to it, so I don't want to do that either. I value my job, and I can't risk making waves for the sake of my family, but I feel like my integrity is taking an nosedive. "If a patient develops physical or emotional symptoms that aren't easily managed with routine care, continuous care may be an option. Continuous care provides more intense care in the patient's home environment. A nurse and/or a home health aide will remain in the patients home environment for a minimum of 8 up to 24 hours per day to administer medications, treatments, and support until the symptoms are under control. Some examples of symptoms requiring continuous care would be unrelieved pain, severe nausea and vomiting, severe shortness of breath, anxiety or panic attacks, or a breakdown in the primary caregiver support system. Continuous care is considered a short term level of care and is reevaluated every 24 hours"

[tewdles, RN]

First...thank you for trying to advocate for your patient.

If your hospice is a joint commission or medicare certified agency they are bound to the conditions of participation.

Hospice services for a certified agency should include all of the levels of hospice care.

Many hospices do not use the continuous care level of care precisely because it is so labor intensive. They prefer, instead, to utilize the GIP level of care which allows them to move the patient to a more controlled environment for the acute management of exacerbated symptoms. When the symptom is adequately managed the patient is returned to their environment preferred for death.

It is technically a misuse of Respite care to initiate because of a symptom management issue. Respite is normally provided for the caregiver.

Do you feel safe asking your management team what options are available for this patient?

[jeannepaul, BSN]

you are writing exactly how I feel. We used to have crisis care, but when we were bought out by a corporation, the team we had died. We then started using agency for cc, then we got a new director and cc ended for us. Of course they will not say it, but we havent had a cc case in over a year, maybe longer. We also do not have an inpatient facility. There are some nursing homes we can contract with but it is few and far between.

I am angry about it and in our contract, it says that we feel we are able to meet our pt's needs and if we cannot, we will find them an agency that can. I know of a couple of pt's that I will tell them to start looking for a new hospice if and when crisis care is needed. I bought it up to the powers that be and they said we CAN do it. Yea right, when and how. I feel if they meet the criteria, they should have it. We end up going out there several times a day because of it.

We also cannot order ER kits at admission and they have to be "approved" when we do order them, we cannot get ABH without an act of congress and we will no longer pay for antibiotics for UTI's or URI's.

I could say more, but I won't. I just think it is sad that it has gotten to this point since it became corporate. Hospice is not about taking care of patients, it all about money.

[nurseebol]

I am relieved to not be alone. Problem is, out hospice is supposed to be "the best " it is out slogan. Our reputation has been good. But yet when people need this service they are referred to respite. Luckily we do have a small inpatient center that is nice. We are good with E kits. They r getting funny about supplies and I get that. But sometimes it is a bit much. We cannot order a special mattress unless they are already broken down. I am going to approach them about this because it is illegal and I know they don't want this to get out widely among the staff. I do t understand why they don't try to do it cuz the reimburse rate is pretty high for it. They are sending me to class for certification and once I start I have to stay for 2 years. I think that will be a good time to mention it as I will be less disposable lol. I am on a quality improvement committee and that will be my opportunity to ask for "clarification about this benefit I heard of"

[nurseebol]

Btw we never paid for antibiotics or any drug not related to hospice diagnosis

[Sterling-RN]

Our hospice uses a care team called: extended care. We are not supposed to use the term "continuous" because our regulations state that Continuous level of care requires a minimum of 8hrs presence in a 24 hr period. And rather than putting assumptions that all patients on that level of care will receive 24 hr care, we indicate that it is intermittent and short term. This seems to be a valuable option for both family and agency because visits can be broken up to allow for as much coverage as possible by various team members throughout the day and night. GIP or general inpatient should also be reviewed.

I agree with tewdles' post. I would also start discussions with the family that although the goal of keeping the patient at home is a high priority if that is the patient's and family's wishes, reaching comfort goals is something that may require consideration of placement into a controlled environment. You can do your best to keep a patient at home with the tools and support the family needs most of the time, but occasionally there comes a time when placement is the best option for the patient and the family.

[CrunchRN, ADN, RN]

The hospices in my area seem to provide an aide 24/7 when they deem death is "imminent". Is that not the norm?

[tewdles, RN]

That is not the norm...

The hospice that cared for my mother tends to offer continuous care when they identify that the patient is actively dying...we declined.

There are some pretty specific requirements about what constitutes continuous care for billing purposes...and the documentation is a bit different than from routine care. It is worth doing for the patients and families but it is typically problematic for small and mid sized hospices to execute with any regularity.

[maxycrystal13]

The hospice company that I work for offers CTC in a crisis situation. It's an awesome service!

[midlife_nurse]

Jeannepaul, I've been where you are, and its painful. I loved the work I did for my company, but with the decline in the use of CC, our team of 15 Lpn's who did 12-hour continuous care shifts was cut to 5, then three, then one, and the one only gets to work about 24 hours a week. I'm so sad thinking of the unmet needs these hospice families must have. I have gotten to work one 12-hour shift for this company in 3.5 months, and they were so grateful to have me for management of pain, respiratory distress and just general education about the dying process. I really miss hospice, and I worry that this company now plans to meet the minimum requirement for CC using 4-hour home health aide shifts coupled with extended visits by the already-overburdened Rn staff. They say their census is dropping, and I'm sure satisfaction survey results must be scathing.

[nurseebol]

Not the norm around here. However, there are some hospices that do, just not many.

[nurseebol]

I understand. We are cutting back supplies and what we provide. Now our referrals are down. They want us to help "market". I think they have a double edged sword here. The facilities want low air loss mattresses for risk of skin breakdown, not actual...they won't provide unless there are 2 stage II's or higher. Crazy!