Hospice Nursing Question

Call me Al · Nov 13, 2014

I have worked for two very different hospices over the past few years. It is my understanding that we cannot take dc meds without an order from their primary care physician. Many times on admission, the pt or family will ask if there are some meds that can be stopped. Hospice may make some recommendations but the pcp always makes the decision.

stirfried · Nov 13, 2014

... It is never black and white. It is also good practice to use comfort meds as needed and to start "low and slow" so as to avoid "snowing" the patient.

Wow, thanks for all the answers!

RE the above quote, is this something that happens often and is accepted? (Snowing)

When it comes to the horror stories I do agree that some people just don't understand or accept the death process.

Without getting too off track of the original topic, I was pretty fascinated by the Menard story (young lady with glioma who was assisted by her doc to take her own life with pills that she took herself when she was ready. Recent story in the US.)

My reason for bringing her up is that she is someone who was definitely "ready."

When it comes to hospice patients, what if they're just not ready? Sedation makes it impossible for them to do what they need to do or say what they need to say. I'm not talking about if they're in pain or aggitated. I'm saying once pain or agitation are under control why do they continue to be sedated?? They have no chance for conscious peace before they die. No chance to fight to live another day (for whatever personal reason they have.)

They heavily sedating drugs DO have an effect on WHEN the patient dies. How do you deal with that responsibility?

Whispera, MSN, RN · Nov 13, 2014

When I worked in hospice, patients would have the medications, that were prescribed for the reason they were in hospice, discontinued, but all other medications were continued. Medications for pain and anxiety and other symptoms of discomfort were given prn, not around the clock. Haldol would be like hitting an ant with a hammer if the person wasn't psychotic. Ativan works much better for anxiety.

Your story makes me cringe. So much seems soooo inappropriate...

heron, ASN, RN · Nov 13, 2014

Wow, thanks for all the answers!
RE the above quote, is this something that happens often and is accepted? (Snowing)
When it comes to the horror stories I do agree that some people just don't understand or accept the death process.
Without getting too off track of the original topic, I was pretty fascinated by the Menard story (young lady with glioma who was assisted by her doc to take her own life with pills that she took herself when she was ready. Recent story in the US.)
My reason for bringing her up is that she is someone who was definitely "ready."
When it comes to hospice patients, what if they're just not ready? Sedation makes it impossible for them to do what they need to do or say what they need to say. I'm not talking about if they're in pain or aggitated. I'm saying once pain or agitation are under control why do they continue to be sedated?? They have no chance for conscious peace before they die. No chance to fight to live another day (for whatever personal reason they have.)
They heavily sedating drugs DO have an effect on WHEN the patient dies. How do you deal with that responsibility?

The question about being "ready" is a tricky one ... who decides readiness? Death, like birth, happens when it happens ... a terminal illness can, and often does, outpace a person's ability to cope. Social workers and spiritual counselors can assist with this. But hospice is not miraculous ... as with all providers, we have to work with what the pt brings to the table. A "good" death is not always possible. Sometimes the best we can do is make it a little less awful than it would have been otherwise.

There is no way to address your question about sedation with a single answer except that "it depends". Again, it's the risk/benefit balancing act that we do in hospice ... and again, there's many times when the pt's need to tie up loose ends - so to speak - is outweighed by the need to relieve suffering.

I'm going to assume that you're referring to what we call "terminal sedation". It's the most extreme intervention we do and each instance is an ethical challenge involving the entire team, the pt and the family of choice. It's the intervention of last resort. I'm also assuming you're concerned that heavy sedation keeps the pt from eating and drinking. The question then comes up - why was the pt sedated and was s/he eating or drinking before being medicated?

For instance, many end-stage COPD sufferers finally die of respiratory failure, either as a result of exacerbation d/t infection or something, or as a result of disease progression to a point that is not compatible with life. For some of them, to be awake is to be fully aware of being slowly strangled ... the panic and air hunger this triggers is intolerable. Morphine, diuretics, oxygen, ativan and neb txs no longer relieve the pts distress. If the pt is cognitively intact enough to engage in the kind of end-of-life work you describe, then they've either already done it, or they have to do it while simultaneously undergoing the extreme distress of air hunger - not a likely scenario, but it happens, depending on the pt's need to finish one last task.

Or it's too late. That happens, too.

I have been involved with three cases where terminal sedation was employed: one was the end-stage lunger I described above, one was a woman dying of COPD whose quality of life was so poor that she wanted to let herself die but was afraid of the agonizing air hunger and panic, and one was requested by the spouse of a woman slowly strangling (I mean over the course of days) from an enlarging tracheal tumor. Since I first met all three of these patients before they were sedated, and saw their suffering, I would rather cut off my own leg than let them wake up, ever.

If the pt is not cognitively intact, then they're not going to do that work anyhow - if heavy sedation is indicated by presenting symptoms, then withholding it is malpractice. Again - it depends on the pt's situation and wishes, the family's needs and capabilities, the level of impairment and whether the pt's symptoms recur after the sedation wears off.

As for dealing with the "responsibility" - again, what responsibility are we talking about? Do I really have a responsibility to extend a person's life to the last possible second?

It's impossible to design any kind of study to establish whether sedation by itself actually shortens life to any significant extent. I do remember reading one article that "guess-timated" that morphine titrated to effect - for instance in the withdrawal of ventilator support - might shorten "life" by a matter of 10 minutes or so. We don't have data, as far as I know, regarding other sedating agents like haldol, thorazine, propofol or the benzos.

Ultimately, the question for care-givers is one of intent. Is the intervention undertaken with the intent to relieve suffering or with the intent to kill the pt. sooner? Mind you, I'm not talking about sedation used inappropriately, either from lazy assessment, a rookie misunderstanding of the role of hospice or a CM's attempt to keep the pt from becoming a "bother".

As a nurse advocating for your patient, you have the right to question treatment decisions you think are wrong ... and that includes a hospice nurse's decision to keep a pt continually sedated. What I'm trying to do here is lay out some of the factors that feed into such a decision.

It's a big subject - I hope this has made some sense.

toomuchbaloney · Nov 13, 2014

I have worked for two very different hospices over the past few years. It is my understanding that we cannot take dc meds without an order from their primary care physician. Many times on admission, the pt or family will ask if there are some meds that can be stopped. Hospice may make some recommendations but the pcp always makes the decision.

Frankly that is incorrect. The patient and the family make the decision as to whether or not they are going to use the medications that the MD has ordered. If they don't want them they don't have to take them, they are entitled to that bit of dignity, regardless the thoughts of the medical provider. The patient/family is the central and most important member of the hospice team. Their vote counts.

So, upon EOB the patient says "I don't want to take these drugs anymore" and hands you their list. You discuss with them the potential benefits that some of the medications may provide in terms of quality of life. Then you inform the physician of the patient/family decision. Maybe the MD objects and refuses to discontinue the orders. The Case Manager RN simply provide notation at each IDT as to whether or not the patient/family is following the MD medication POC.

ShesanRN · Nov 13, 2014

I'll always remember something my medical director said once: we in hospice do not help people die ... we help people who are dying. Think about it ...

Sometimes that help means discontinuing medication, other times continuing medication for all the reasons you've mentioned in your posts. The patient's desires and quality of life drives everything we do.

At our hospice, it's a very individual process for each patient. There is no "cookie-cutter" plan, nor would we want there to be.

lifelearningrn, BSN, RN · Nov 14, 2014

Some patients/families choose to discontinue all meds sans comfort medications.. for example, a pt at a LTC center I worked in was given

I discuss with family what medications they would like to continue and which they'd like to discontinue, based on a person by person evaluation. For example, a recent patient, CHF, has had multiple falls in past few weeks. Her risk of serious bleed on Warfarin was a real concern. With her blessing, we d/c'ed it and added 325 aspirin daily. We also disconitnued other meds that she had stated she hated taking anyway (centrum silver, some PRNs).

Hospice is only required to pay for medications related to the hospice dx, so Hospice has no financial incentive to discontinue all medications. If there is a hospice covered medication that is expensive, we work with patient and doctor and find alternative med within our formulary. Most of the time though, by the time hospice is brought in, patients are ready to be done taking hand fulls of medications anyway. Honestly, what good is a calcium supplement for a 96 year old with less than 6 months? Or a statin?

I do think a lot of people think, well, "patient was fine until he was put on hospice." That simply is NEVER the case. A patient is put on hospice when they are certified as dying. Two doctors have to certify they have less than six months to live. MOST of the time, it's much, much shorter than that. Often, it's less than two weeks. Patients are never "fine" when they come on hospice, they are almost ALWAYS dying.

katfish67lpn · Nov 14, 2014

I have worked home health hospice and have taken care of many, many patients dying with and without hospice care in SNF settings. I have never seen Haldol used for anxiety it has always been Ativan and of course MS for resp. distress/pain control.

toomuchbaloney · Nov 14, 2014

I have worked home health hospice and have taken care of many, many patients dying with and without hospice care in SNF settings. I have never seen Haldol used for anxiety it has always been Ativan and of course MS for resp. distress/pain control.

Haldol is typically used more for agitation.

Ativan is not necessarily the best option for our very elderly patients.

Morphine is only one opiate that may be utilized for palliation of dyspnea, it is the most studied and perhaps the least expensive but others (like hydromorphone or codeine) also provide relief.

HoneyMagnolia · Nov 14, 2014

OP mentioned Haldol being given for anxiety and toomuchbaloney noted it's more commonly given for agitation. Haldol is also used for nausea/vomiting and can be given rectally, in place of the more expensive Phenergan suppositories.

I just wanted to add that a CHF pt has to be at endstage to be admitted to hospice, i.e., symptomatic despite optimal treatment, oxygen dependent, unable to maintain intake d/t SOB and fatigue, etc. When all available medical treatment fails to provide relief of symptoms, the focus shifts to quality of life. For some people, that means treating their hypoxic-induced anxiety to the point of sedation. For others, it means accepting some discomfort while maintaining alertness to complete unfinished "business." As other posters have noted, hospice is patient centered and decisions are made by the patient, family and interdisciplinary team with the patient's goals guiding them.

guest538567 · Nov 15, 2014

Cost is not an issue, because hospice is only required to provide meds for symptom relief and that's under a flat rate compensation system. They don't bill separately for meds. Anything that's life-prolonging or treating a condition other than the hospice diagnosis is the responsibility of either the patient or her insurers - hospice has no control over it.

It is my understanding that Medicare guidelines now require a hospice to cover the cost of medications associated with primary or secondary hospice diagnoses. If a hospice agency is being honest, this would entail paying for medications with any diagnosis that could impact life expectancy. This may certainly be common meds like antihypertensives, anticholinesterase inhibitors, inhalers, statins, etc. There can be significant cost associated with these medications. Also consider that some patients are on chemotherapeutic agents that do not alone disqualify them from hospice but could quickly bankrupt a hospice agency if they accepted a patient without discontinuation of these meds.

It should also be said that many times we are too aggressive with medications in the elderly and at end of life. Antihypertensives and statins are designed for reduction in cardiovascular events that could be seen long term. The same applies to aggressive glycemic control in the elderly. Patients on hospice with limited life expectancy likely will have very little benefit from these types of medications. Other meds like hormones, COPD meds, anxiolytics, antipsychotics, antidepressants, etc... all would have indication in helping to relieve symptoms and provide comfort at end of life and should be continued.

The discontinuation or streamlining of a patient's medication list should be undertaken by a knowledgeable medical provider in coordination with the patient and/or family with a comprehensive discussion about the risks/benefits of each med. Some meds need to be tapered or should not be abruptly discontinued. This is an individualized process and an important one in end of life care. The goal is not to stop meds to facilitate or hasten death but to reduce pill burden or stop meds that have little benefit and focus instead on symptom management and comfort.

lifelearningrn, BSN, RN · Nov 15, 2014

It is my understanding that Medicare guidelines now require a hospice to cover the cost of medications associated with primary or secondary hospice diagnoses. If a hospice agency is being honest, this would entail paying for medications with any diagnosis that could impact life expectancy. This may certainly be common meds like antihypertensives, anticholinesterase inhibitors, inhalers, statins, etc. There can be significant cost associated with these medications. Also consider that some patients are on chemotherapeutic agents that do not alone disqualify them from hospice but could quickly bankrupt a hospice agency if they accepted a patient without discontinuation of these meds.
It should also be said that many times we are too aggressive with medications in the elderly and at end of life. Antihypertensives and statins are designed for reduction in cardiovascular events that could be seen long term. The same applies to aggressive glycemic control in the elderly. Patients on hospice with limited life expectancy likely will have very little benefit from these types of medications. Other meds like hormones, COPD meds, anxiolytics, antipsychotics, antidepressants, etc... all would have indication in helping to relieve symptoms and provide comfort at end of life and should be continued.
The discontinuation or streamlining of a patient's medication list should be undertaken by a knowledgeable medical provider in coordination with the patient and/or family with a comprehensive discussion about the risks/benefits of each med. Some meds need to be tapered or should not be abruptly discontinued. This is an individualized process and an important one in end of life care. The goal is not to stop meds to facilitate or hasten death but to reduce pill burden or stop meds that have little benefit and focus instead on symptom management and comfort.

Hospice does have to pay for medications related to hospice diagnosis. However, chemo would not be something that is covered, as it is curative. If a patient is on a ridiculously expensive drug that is related to their hospice dx, we work with doctor, patient, family and pharmacy to find a suitable alternative (within our formulary). Medications related to comorbid conditions are not covered, but often the patient's insurance covers those meds. Also, a patient can be dying from one disease, and actively seeking curative/supportive treatment for another. As long as the services do not overlap, medicare pays hospice and will still reimburse for the other treatments.