Q: Dear Dr. K,
With all the news about opioids and benzodiazepines, and their risk of death, I would love to hear your take on the use of these drugs in hospice.
We’ve had two family experiences now (my Mom and my Aunt) who were given these drugs right away when they went on hospice…without hospice trying anything else first that would be less dangerous. My Mom was up and about walking one day at her memory care facility, even laughing. The next day, when hospice put her on morphine and Ativan, she was in a coma. She died 13 days later without ever regaining consciousness. When I protested and asked why she wasn’t waking up, the hospice nurse said, “It’s not the drugs, it’s the disease.” (Mom had dementia.) The nurses wouldn’t let us give her fluids (“you don’t want your mother to aspirate, do you?”) or feed her (“you don’t want your mother to choke, do you?”).
With my Aunt, she had also been in the memory care facility and got to the point of needing a two-person assist. Her power of attorney (POA) was given the choice of moving my Aunt into a nursing home or bringing in hospice. Hospice immediately gave her morphine and Ativan, then backed off the Ativan and gave her morphine every two hours until she died 3 days later.
Now the third sister, also with dementia, has been in hospice for two months and counting. She is lucid most days, eating/drinking, comfortable—all without the opioid/benzo drug combo, because of our experience.
How can family members identify a hospice that doesn’t use this troubling combination of drugs from the start, without first trying something less dangerous, to make a patient “comfortable”?
A: Thanks for sending in this question. I’m very sorry to hear that your experiences with hospice have left you concerned.
It is indeed extremely common for hospice to use morphine and lorazepam (brand name Ativan) to treat end-of-life symptoms. That’s because many people on hospice are suffering from troubling symptoms that these medications can relieve, such as pain, shortness of breath, anxiety, and agitation.
Still, these medications are not always necessary. They are supposed to be prescribed and used as required to relieve the dying person’s symptoms, not by default. So the situation you describe with your mother and your aunt does sound potentially concerning. At a bare minimum, the hospice personnel should have done a better job of discussing their proposed care plan with your family.
Now let me be clear: I cannot say if the way they prescribed morphine and lorazepam was inappropriate or not, because it’s impossible for me to know the specifics of your mother and aunt’s medical situation.
Still, we can certainly review some basics about hospice care for people with Alzheimer’s and related dementias, as well as recommended best practices, when it comes to using opioids and benzodiazepine sedatives.
Here’s what I’ll cover:
- The basics of hospice
- Hospice for people with dementia
- How opioids can help at the end-of-life
- The use of benzodiazepines in end-of-life care
- How to choose a hospice provider
- What to do if you’re concerned about the care your relative is receiving during hospice
The Basics of Hospice
Hospice, as you may already know, is a package of palliative care services specially designed to support people who are dying, and their families. Medicare covers hospice services for older adults if a physician can certify that the person is likely to die within six months.
Hospice care usually includes the following:
- Clinical services to address the terminally ill person’s physical, emotional, social, and spiritual needs.
- This is provided by a multidisciplinary team, which usually includes nurses, social workers, counselors, and therapists. Other forms of support such as home health aides or specially trained volunteers may also be available. A physician oversees the medical care plan and can assist with particularly challenging medical issues.
- Special attention and expertise in managing difficult or uncomfortable symptoms.
- Hospice clinicians usually have expertise in managing symptoms such as pain, shortness of breath, anxiety, constipation, nausea, agitation, and many others.
- A focus on optimizing quality of life.
- Hospice teams are supposed to enable the dying person to have the best quality of life possible for the time that is left. Most hospice clinicians have been trained to talk to patients and families about what is important to their quality of life.
- Support for family members.
- Hospice care includes counseling and supportive services for the patient’s family members, who are often very involved in the dying person’s day-to-day care. Bereavement support is also usually available.
- Medical supplies and equipment, such as a hospital bed or wheelchair.
Medicare hospice services are provided by certified agencies or organizations. Sometimes they are part of a home health agency, a nursing home, or another bigger healthcare organization. They can be non-profit or for-profit.
Hospice services can be provided in the patient’s home, in assisted-living, or in a nursing home. They can also be provided in special inpatient or residential hospice facilities.
To learn more about hospice care, see:
- Kaiser Health News: Learning About Hospice Should Begin Long Before You Are Sick
- Medicare.gov: How Hospice Works
- NextStepInCare.org: Family Caregiver’s Guide to Hospice and Palliative Care
- National Hospice and Palliative Care Organization:
I find that families tend to find hospice services immensely helpful. That’s probably because hospice sends nurses and other healthcare providers to the home — so convenient for families! — and addresses symptoms and difficulties that primary care providers may not be equipped to assist with. Hospice also usually provides a 24 hour/day number that you can call, if you have concerns or need help.
Hospice for People with Dementia
Hospice services are intended to provide support and assistance, regardless of what illness a person is dying from.
That said, in the early days, hospice especially served people dying of cancer, rather than people dying from a slow terminal illness such as Alzheimer’s disease. It’s probably for this reason that some features of Medicare’s hospice benefit, such as the six-month prognosis, are better suited to cancer diagnoses than other terminal illnesses.
Today, it’s become more common for people with dementia to use hospice services at the end of life. In 2014, 15% of hospice admissions were for dementia. Research shows that in people with advanced dementia, hospice usually improves care and symptoms at the end of life.
One challenge in beginning hospice services for people with dementia is that it can be quite hard to determine when the person has reached a “six-month prognosis” (i.e. is unlikely to live more than six months). That’s because Alzheimer’s and other dementias usually progress much more slowly than advanced cancer does.
Medicare’s guidelines on hospice coverage for people with Alzheimer’s disease
Medicare does provide some guidance to clinicians, to help them determine when a person with dementia may have reached a six-month life expectancy. Here is an excerpt from Medicare’s Hospice – Determining Terminal Status Guide (LCD L33393) :
Patients will be considered to be in the terminal stage of dementia (life expectancy of six months or less) if they meet the following criteria.
- Patients with dementia should show all the following characteristics:
- Stage seven or beyond according to the Functional Assessment Staging Scale;
- Unable to ambulate without assistance;
- Unable to dress without assistance;
- Unable to bathe without assistance;
- Urinary and fecal incontinence, intermittent or constant;
- No consistently meaningful verbal communication: stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words.
- Patients should have had one of the following within the past 12 months:
- Aspiration pneumonia;
- Pyelonephritis;
- Septicemia;
- Decubitus ulcers, multiple, stage 3-4;
- Fever, recurrent after antibiotics;
- Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous six months or serum albumin < 2.5 gm/dl.
(For more on the FAST scale for dementia, see How to Understand the Stages of Alzheimer’s & Other Dementias.)
Of course, people with dementia do often suffer from other serious illnesses, such as cancer, advanced heart or lung disease, or end-stage kidney disease. So older adults often become eligible for hospice care before their dementia has reached very advanced stages.
But in the absence of such advanced other diseases, if a person with dementia is eligible for hospice, then this usually means that he or she has severe dementia. In this stage of dementia, a person will have lost the ability to speak meaningfully, and will no longer be able to walk.
How Opioids Can Help at the End-of-Life
Research shows that certain symptoms and difficulties are common in people with very advanced dementia (whether or not they are on hospice). These include:
- Aspiration and other swallowing difficulties
- Pneumonia
- Fevers
- Shortness of breath
- Pain
Most people know that opioid medications such as morphine are effective pain-killers. For this reason, they are often used to treat pain at the end-of-life.
But people sometimes don’t know that opioids have also been shown to help relieve shortness of breath. So in hospice, a drug like morphine can be used to provide relief from two common end-of-life symptoms: pain, and/or shortness of breath.
Now, opioids do have some downsides. We don’t usually worry much about addiction in people who are terminally ill. (I worry more about whether someone else in the household might want to use — or sell — these drugs.) But opioids do cause other problems and side-effects, such as constipation.
One of the biggest concerns about opioids is that they can slow a person’s breathing rate. This is a problem because if a person’s breathing gets too slow, they end up with too much carbon dioxide and not enough oxygen in the blood, and this can cause death. (This is how people who overdose on narcotics can die.)
Now, people on hospice are expected to die. But that doesn’t mean we want to be rushing things along with medications; they are supposed to die of their illness, not because we overly medicate them.
To walk this fine line, palliative care clinicians are supposed to focus on treating the distressing symptoms with just enough medication to provide adequate relief. With careful attention and titration of the medication, it’s usually possible to provide relief without lowering a person’s respiratory rate too much. (I usually don’t worry too much as long as the person’s breathing rate is at least 10 breaths/minute. People who are terminally ill often fall asleep when we treat their pain or shortness of breath, but that’s often because they are finally getting some relief from their symptoms!)
Since people with advanced dementia often do seem to be experiencing pain, at the end of life it’s often reasonable to treat this pain with morphine or another opiate painkiller. However, the dosing should be carefully monitored, and it’s essential to manage any associated constipation or other side-effects.
The American College of Physicians covers the use of opioids at the end of life here: Evidence-Based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life: A Clinical Practice Guideline.
Benzodiazepines in End-of-Life Care
Benzodiazepines such as lorazepam (brand name Ativan) are very commonly prescribed in hospice. Usually, the order says to administer a certain dose, at a certain interval, “as needed” for anxiety or agitation. Benzodiazepines may also be prescribed to treat symptoms such as nausea, insomnia, or seizures.
Curiously, although benzodiazepines are very commonly used in hospice, there is actually not a lot of clinical evidence on how to use them beneficially, especially in older adults dying of dementia.
A very interesting study published in 2016 surveyed hospice clinicians regarding their use of and attitudes towards using benzodiazepines in hospice. The authors also conducted an extensive review of clinical research on benzodiazepines in palliative care.
The authors found that most hospice clinicians use benzodiazepines frequently, despite there being little clinical evidence of benefit and potential for harm (especially for elderly hospice patients).
The authors also noted that hospice clinicians reported using benzodiazepines to treat delirium, even though clinical research usually suggests that benzodiazepines can cause or worsen delirium. (If medication is absolutely needed for delirium, geriatricians often prefer to try a low-dose of antipsychotic, as I explain here.)
In short, although benzodiazepines are very commonly prescribed and used in hospice, it’s not clear that their use is always strictly necessary, or even the best choice for managing certain symptoms.
How to Choose a Hospice Provider
Hospice care is ultimately like all medical care, in that it’s best provided by clinicians who:
- Have been properly trained and provide care grounded in the latest best practices,
- Are able to tailor the care plan to a patient’s needs and symptoms (rather than always resorting to a default set of medical orders),
- Are able to skillfully communicate with patients and family members.
Death and dying become quite familiar to hospice clinicians. But it’s usually new, frightening, and emotionally fraught for the watching family. So ideally, hospice clinicians should be able to help families understand why a certain approach may be a good way to help the patient attain his or her goals.
In the question, you mentioned that the nurses didn’t let you give your dying mother fluids or food. This may have been medically reasonable, but if so, they should have been able to give you better explanations, so that you felt better about this course of action.
For instance, dying people often need less fluid and food than their family wants to give them. That’s because the increased fluid and food may not improve their comfort or dying experience, but might indeed cause some choking and distress.
In my own experience attending on a hospice unit, I found that families were often very anxious to feel that they were doing things to help and support their dying loved one. They also usually needed reassurance that they — or the hospice team — weren’t harming or letting down their loved ones.
So, how do you find a hospice team that will excellent care to your older relative with dementia, and to your family?
Here’s what I recommend:
- Do a little research on the hospice agencies that serve your area.
- Use a worksheet to make sure the hospice agency is accredited, and to get important questions answered. The National Hospice and Palliative Care Organization has a good one here: Choosing a Hospice.
- Ask friends and family members about their experiences with local hospice agencies.
- If others felt the hospice agency was responsive and caring, that’s usually a good sign.
- Ask your usual doctors for a recommendation.
- This can be especially useful if your primary care doctor is of the attentive and caring type.
- But bear in mind that busy doctors may not get around to hearing feedback on how the hospice agency treated their patients. Many doctors simply refer to whatever provider is most familiar or convenient for them.
- Consider whether the hospice service is non-profit versus for-profit.
- Some evidence suggests that some for-profit hospices may be run with more emphasis on the “bottom line,” and that this may not benefit their enrollees or the Medicare program. For more, see:
I usually encourage families to look into all available hospice agencies in their area, including for-profit agencies. But I do think it’s important to be aware of the concerns that have been raised regarding for-profit hospice agencies.
What to do if you’re concerned about the care your relative is receiving during hospice
If you have the energy to do so, I recommend first being proactive right when the hospice care begins. In particular, I recommend:
- Asking to see what medications are being ordered, and under what circumstances they’ll be given.
- Bringing up any concerns you might have regarding the use of opioids or benzodiazepines.
- Clarifying your family’s goals and priorities regarding use of the medications.
- For instance, you could specify that although pain management is indeed important, you’d like to minimize sedation and have your loved one remain as alert as possible.
- Given that benzodiazepines often aren’t the best way to manage people with dementia, you could consider asking that those be minimized.
You should also know many hospice agencies use pre-made templates to prescribe medications. Such templates will often include orders to provide morphine as needed, and also lorazepam as needed.
You can view a hospice order template here: Initial Hospice Admission & Comfort Med Orders.
As you’ll see if you view the order template, “as needed” orders often give the nurses quite a lot of latitude in how much morphine and lorazepam they can give. So it’s important to bring up your goals and priorities regarding medication use right away. This will enable to nurse to better calibrate her care to the needs and preferences of your older loved one and your family.
If you’re concerned about the hospice care provided
If you find yourself concerned once hospice care has started, here are some things to try:
- Bring up your concerns to the nurse. You’ll want to give him or her a chance to better communicate with you, and perhaps make some changes to the care.
- Ask to speak to the supervising physician. Hospice agencies will have a medical director. This person can help get the care back on track. You can also try speaking to your loved one’s usual doctor, especially if that physician has remained involved or has a background in geriatrics.
- Share your concerns in writing with the hospice agency. Concerns in writing can carry more weight than those expressed verbally. This can help you get the extra attention you might need for the agency, in order to resolve a communication issue or other problem.
- Switch to a different hospice provider. According to Medicare.gov, you have the right to change your hospice provider once during every benefit period. (Hospice benefit periods are initially 90 days, and after 6 months switch to 60-day periods.)
- Consider filing a complaint with state or federal authorities. This is less about improving the care of your own family member, and more about reporting an agency which might be providing poor care to other. You can find a list of agencies to consider contacting here: Making A Complaint About A Hospice.
Sobering Truths Reflected in this Q&A
In truth, the concerns described in this question make me a bit sad. I know that most of my colleagues in healthcare are really trying hard to help the patients and families they work with.
But, it remains absurdly common for patients and families to encounter sub-optimal healthcare. Health providers often aren’t able to communicate and partner with families as well as we want them to. And they may not be up-to-date on the latest clinical evidence or best practices.
In short, healthcare usually involves good intentions but frequently flawed execution.
It’s important to not fault individual health providers too much for this. Most of the time, they are doing their best. But, they are stuck working within a system that just doesn’t provide them with the support, resources, and time that they need to do better.
So, if you’re a patient or family caregiver, remember: If you can muster the time and energy to do so, it’s often a good idea to do a little homework and ask questions about the healthcare that you or your older loved ones are getting.
Hospice is an important and valuable service for those who are dying and for their families. A good hospice team should welcome the opportunity to hear your questions, your concerns, and your priorities.
Please note: I will no longer be approving or responding to comments on this article. Thank you for reading, I hope you found it helpful!
delia says
Thank u so much for enlighten me
On this matter of Hospice my father 83 has been only 1,week he is showing some agitation & all your info helped me to decide better what meds or not to give .thanks again D.
Leslie Kernisan, MD MPH says
I’m glad this has been helpful. You should also be able to contact the hospice team, if you have any questions or concerns regarding what to give your father for his symptoms. Pain and constipation are common problems at the end-of-life, but the hospice team will be best positioned to guide you, as they will know what are his medical conditions and previous symptoms. Good luck!
Dieter Heymann says
Dear Dr. Kernisan
My wife who is somewhat demented is served by hospice. One of my sons has told me that I have relinquished my Durable Power of Attorney in Health for my wife. Is that correct?
If my wife were not demented would she have the right to refuse taking a drug she does not want to take? Under all circumstances? If that is correct is it then not true that I can make that refusal for her in this case?
When my wife was briefly in a hospital before she entered a hospice I asked her doctors the same question. They all told me that I had the right to stop all treatments including medication. Of course that also implied that the hospital would discharge her.
Suppose that I ask our hospice not to give my wife certain medications could that hospice terminate the agreement?
Leslie Kernisan, MD MPH says
Hello and thanks for these questions.
If you are your wife’s durable power of attorney for healthcare (DPOAH), no medical decision you make will annul your POA, so you would remain her DPOAH even if she enrolls in hospice.
Enrolling in hospice does sometimes mean relinquishing Medicare coverage of certain types of health services, this may be what your son had in mind. I would recommend asking the hospice agency to clarify which, if any, services you will need to relinquish.
In terms of your right to refuse certain medications: yes, patients normally have the right to refuse medications or another particular medical intervention. As her DPOAH, you should be able to do so on her behalf.
Refusing a medication or particular procedure does not usually mean the termination of all care from the provider. A good health provider should be willing to allow a patient some degree of choice in what care is used to help a person achieve their health goals, so usually the relationship is only terminated if the patient’s refusals make it truly impossible for the provider to provide healthcare.
If a clinician proposes a medication and a patient refuses, a good clinician should ask why and seek to better understand the patients concerns and goals. There are often many different ways to help a patient achieve their health goals.
Frankly, I would be surprised if the hospice agency terminated care just because you didn’t want her to receive certain type of medications. That said, I would encourage you to communicate your concerns and goals more broadly. So instead of saying “don’t give her any of this type of medication,” you could say “I would like for her to be sedated as little as possible, so I would prefer we not use this type of medication unless you think it is absolutely necessary to maintain her comfort.”
You can also ask, for any medication that is recommended or prescribed: “What is the purpose of her taking this? How will this help her remain comfortable (or insert whatever goals you have for her medical care)? Is there a less sedating alternative?”
Hope this helps, good luck!
Elizabeth Smith says
Hello Dr. Kernisan,
Your site is an invaluable resource for family caregivers looking for information. We cannot thank you enough for being so kind and accessible. .
I am a bit late to the conversation. I am hopeful that you will have a chance to address a concern of mine. My father who is 94 is in mid to late stage dementia and in the last year now lives at home with me, my husband and my mother. He has never been formally diagnosed with dementia or treated for it but of course we knew he had some form of dementia. He was recently hospitalized for a fall and the attending noted him as late stage alzheimer’s. He is back home and is rapidly becoming more verbally aggressive and angry. We are working with trying to get him into hospice. They are concerned he may become physically violent and have mentioned the possibility of him entering a behavioral health program for several weeks to begin a supervised medication program.
My concern in brief: this sounds like he would enter as a dementia patient and exit as a zombie. The goal seems to be to make him more easily manageable.
Your thoughts would be greatly appreciated.
Best,
Elizabeth
Leslie Kernisan, MD MPH says
Thanks for your words of appreciation for the site. It’s very good of you to have your parents living with you, they are lucky that you are able and willing to do it.
Regarding your father’s situation, there are a few things about it that strike me as unusual. First of all, if he is able to be verbally aggressive and angry, then he doesn’t sound late-stage Alzheimer’s, he sounds closer to moderate-stage. (People lose the ability to be verbal in late-stage.) It is not clear to me what other conditions he has that justify hospice, but if he was referred and they will accept him, that’s generally a good thing because hospice does bring many helpful services into the home, and families often find this to be a huge help.
As for the behavioral health program, are you referring to a stay in a special inpatient “geropsych unit?” It sounds unusual to refer someone who is 94, has dementia, and is potentially hospice-eligible for such a program. I would consider it only as a last resort, after trying to manage the problem at home has failed. Among other downsides, an older person with dementia will be disoriented and stressed by admission to a new environment. This will usually worsen behavior, and makes it very hard to manage the behavior without using medication.
If an older person with dementia is verbally — or even physically — aggressive, or is otherwise agitated, we usually treat this is a “dementia behavior management” issue and I think it’s best to start by trying to troubleshoot these in the person’s usual living environment. For this, we use chemical restraint as a last resort. We always start by trying to figure what might be triggering or aggravating the person. Especially after hospitalization for a fall, I would be thinking about whether he might be experiencing pain and/or constipation. It’s also possible that he became delirious in the hospital and that this has made him worse; delirium can resolve slowly with time and rest.
I explain an approach to managing difficult behaviors, including the role of medications, here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
Again, using medications to “chemically restrain” an agitated person with dementia is not ideal and should be a last resort. However, if that what it takes to keep his caregivers feeling safe, and to keep him in your home — which is likely what’s overall best for him –, then the benefits probably outweigh the downsides. If you want to avoid him being “a zombie,” then they should use the lowest doses necessary.
For people with dementia who are on hospice or considering hospice, I generally start by trying pain medication. Tylenol is usually not enough. I have often used low-dose opiates, but if opiates are used then usually extra laxatives are required to prevent constipation. I personally have not used marijuana-related products but those are another possibility.
If after treating for pain the person remains agitated or aggressive, and we have tried other non-drug approaches to managing the behavior, then we may need to move on to some of the other medications I mention in the article.
The goal of making him “more manageable” is not unreasonable, but unless he is really quite violently out of control, it should be possible without a special behavioral program, and it’s often possible to avoid overly sedating people. Good luck!
Elizabeth S. says
Thank you so much for your thoughtful and thorough response.
It has indeed been confusing regarding the stage of my father’s dementia. He has never been properly diagnosed other than informal discussions I have had with his PCP. However, during his recent hospitalization his attending physician did report him as late-stage Alzheimer’s. This was quite surprising to me as I had understood it (as you said) that his symptoms were not yet that advanced.
In fact, he has been improving significantly over the last week. He is on a low dose of remeron at night and I stopped the haldol as that seemed to only make him more disturbed. I have also made a point of making sure he gets out of the house for a few hours daily (just a ride in the car) which seems to help keep him less prone to becoming agitated. I believe you nailed it that he has lingering hospital delirium. This has been a huge problem for him with each hospitalization. Perhaps this is passing and hence the improvement.
I take very seriously the use of opiates and am very grateful for your feedback and conservative approach. This will be most helpful to me in going forward.
I am determined and hopeful I can keep my father at home. I know it will be an uphill battle and I thank you again very much for your kindness.
Leslie Kernisan, MD MPH says
How wonderful that he’s been improving! Kudos to you for making an effort to get him outside and for otherwise paying close attention to what seems to make him better versus worse.
Yes, at age 94 and with at least moderate/middle-stage dementia, he is very likely to develop delirium with hospitalization. One is not supposed to stage dementia during hospitalization but unfortunately many doctors till do this!
In some cases, hospitalization seems to trigger a downward spiral that can’t be reversed, but I have seen attentive family care work remarkably well. (People with dementia who have recently been in the hospital also often stabilize and improve on hospice, as a good hospice service provides the kind of care that tends to be very good for them.)
Here’s hoping for continued improvement in his quality of life. I also hope that you will be able to get the right medical care and support for him and your family, whether through hospice or through another option. (Sometimes a “pre-hospice” or “advanced illness management” program is an option for people who don’t quite qualify for hospice; check with your usual provider and your insurance.) Good luck !
Chris Langston says
Dear Leslie – Great “explainer” on hospice. I agree that hospice is a valuable service that usually is very helpful to people who are dying and their families. Unfortunately, we don’t have a very good framework for understanding quality of care in hospice. Not only are some of the clinical questions open (like use of benzos), but even structural ones, like ideal length of service, are unclear and mostly unmeasured.
A couple of things might be good context – 1. The Median Hospice length of “stay” is about 16 days in Medicare. So 50% of people have very short times getting hospice care ~two weeks. So the short terms and quick deaths that are mentioned are not unusal per se. Although, dementia is often thought to be a long-stay condition. 2. Hospice is paid a per diem rate by Medicare, which means that the agency gets paid a fixed rate for each day they are “covering” the person who is dying. (There are actually 2 pay rates now for different phases of care $183.17 per day for the 1st 60 days and 143.94 per day after the 60th day.) This fee is supposed to cover everything, pretty much, certainly everything in the “routine” case where someone is getting care in their own home (or apartment). While there are lots of complexities in hospice payments (total caps, caps on hospital stays, etc.), in general the concern is the “bad” hospices will want long duration, “easy” patients (such as those with end stage dementia). They don’t want to kill them, they want to keep them in care because they don’t need expensive drugs or treatments to relieve their pain as compared to some other potential cases.
So, it sounds more likely to me that some hospice clinicians are following their own values and preferences for end of life (e.g., painless oblivion) and not communicating well or facilitating consensus with the family/delegates of the person. This is wrong, but not probably motivated by greed.
Leslie Kernisan, MD MPH says
Chris, nice to hear from you and thanks for weighing in. (Readers, Christopher Langston is an expert in geriatric health policy; you can listen to my podcast interview with him here: How Foundations Are Improving Health & Aging)
I agree, I don’t think excessive use of opioids and benzos is likely to be motivated by greed. Now whether it’s motivated by the clinicians’ values and preferences…probably in some cases. But I suspect that in a fair number of cases, it’s less about the clinician’s values, and more about habits, or by being rushed.
Betty Desilva says
Thank you so much for sharing a very resourceful piece of information. Hospice care is given by a team and not just one person. It’s good of you to shed some light on a very serious matter. But what if seniors live more than six months or a year? Should the hospice support remains active until death or just for a specific period of time?
You are right about questioning everything. Research and questions can keep family caregivers informed about the processes happening during hospice support.
I am equally sorry to hear about the dreadful experience you had during hospice support. I am sorry for your loss.
Leslie Kernisan, MD MPH says
After six months of hospice care, Medicare requires hospice agencies to reassess and recertify a six-month prognosis. This has to be repeated every 60 days.
Some patients do improve, to the point that the doctors no longer believe they are likely to die within six months. In this case, the person can be discharged from hospice. Hospice services can then be resumed at a later time, when the person once more appears to have a six month life expectancy.
Miriam says
My mother had dementia. Her assisted living recommended hospice. The hospice automatically put my mother on Atavan and morphine. She went drastically downhill, in no time flat. I did some research on the drugs that the hospice was automatically recommending, and discovered that those drugs hastened death in patients with dementia. I immediately got my mother taken off the drugs and she lived for well over a year longer. It took very little online research to find out how morbidly destructive these drugs are. When I called the hospice and told them, they said denied it. Yours is the first article I’ve seen that addresses this. Caregivers need to be proactive, do the research and not assume that hospices know what they’re doing or work in their family’s interest.
Leslie Kernisan, MD MPH says
Yikes, that is quite a story. Thank you for sharing it.
Well, I agree that it seems morphine and benzodiazepines are sometimes inappropriately used in hospice, as in: used in excess of what is strictly necessary to relieve the dying person’s pain, shortness of breath, or other distressing symptoms.
That said, since many people with terminal dementia do experience pain or shortness of breath, it’s often appropriate to give them these drugs — especially opioids. The key is to be careful and thoughtful about how much is given.
I truly don’t believe that these drugs hasten death, whether or not the dying person has dementia, when they are correctly administered.
But obviously you are right: families should be proactive about making sure that hospice clinicians are being attentive, and are using these medications judiciously.
Lynn says
It happened the same way with my Mom. She was taken to Hospice House to “Manage Her Symptoms.” She was give Morphine and Atavan at high dose when she got to the hospice house. They would not let her eat or drink. I thought she had a UTI and they promised to do a test there but delayed it. The test was finally done five days later (had to wait for doctor to order it ), We got her to a hospital but infection, from the UTI was to bad to recover from. I know she had more time to live but their goal was death.
Leslie Kernisan, MD MPH says
This sounds very sad but honestly also a bit unusual. Hospice care usually is accepting of the possibility of death but isn’t supposed to actively encourage death or have a “goal” of death. Also sounds unusual for them to refuse to let your mother eat or drink if she felt like it.
I’m sorry you had such a troubling experience. It does sound like the communication with you wasn’t very good. You may find it helpful to reach out to the hospice and share your concerns, perhaps some of this was due to miscommunication, and if not, they certainly should hear about your concerns and look into the care their staff are providing.
I also hope you will be able to find some support in processing this experience and your grief. It’s very hard to lose a parent under the best of circumstances, and is often even harder if we have concerns or doubts about the care our loved one got at the end of life. Good luck and take care.
Brenda says
Hi .my mom had stomach cancer they said she had six month to live the doc.did surgery.on her n it spreaded n her life went from six months to two weeks n four day she died at hospice they was doing the same thing giving her that meds.but the last day of her life I went n the nurse came n there to give her them meds I told her no she already dying .she don’t need it .my mom heard me n open her eyes .she kept opening them my last words to her was I promise I’m gonna b alright .u can rest now .I’m n wheelchair n my mom was all I had I feel that meds kills them .I no wat morphines do to u .it shut yo body down it kills your organization it has a side effect I feel wen it time to die that god say not man.they killing them ppl not giving them no fluids no food .my mom wasn’t on nuthing n I hate my family for putting her there..I feel if god bare pain y can’t we.
Leslie Kernisan, MD MPH says
Sorry to hear of your experience, it sounds difficult.
Generally, I think we are very lucky to live in a time when we CAN have morphine and other strong painkillers at the end of life, because prior to the modern era, a lot of people died in agony from cancers and the such.
Now, whether your mother got more morphine than was strictly necessary for pain control is impossible for me to say. People can decline very quickly from cancer at the end. It does sound like she was quiet and comfortable at the end. Plus you were there, which I believe means a lot to people. Take care.
Susan Macaulay says
Great article. Thanks for all the good information and your honest opinions toward the end. Much appreciated.
Robert Goldhamer says
Thank you for your in-depth article, Dr. Kernisan, and to the person who so clearly described three relatives with dementia and their hospice care.
My mother had a similar hospice experience, rendered nearly unresponsive due to benzodiazepine+opiod treatment for very dubious reasons. It struck me as “robo-care”: never seen by her doc or nurse practitioner, standardized medication orders, and no discussion about the treatment plan because the doc or nurse practitioner never returned my phone calls or emails.
Your article did help to refine my advance directives. While it’s impossible to address all the end-of-life scenarios, the benzodiazepine/opiod question could be a big part of the “final common pathway” in hospice care. My advance directives now specify no opiods be given unless I report pain and request them, and no benzodiazepines unless I demonstrate delerium or agitation. I do not want to be chemically restrained to avoid falls, unless I’ve actually fallen and had a fracture or head injury.
And I don’t want fluid and food restriction unless I’ve had documented (by x-ray) aspiration pneumonia.
Thanks again for your very thorough article. As a retired physician, I feel better prepared to defend myself from hospice over-care.
One last thought. Your email that linked to this article was titled, “What Many Doctors Won’t Tell You About Hospice.” Maybe they don’t tell because they don’t know!!
Leslie Kernisan, MD MPH says
Thank you for this comment, I’m so glad you found the article helpful. Yes, based on what I hear from people (and occasionally observe directly), some hospice care is pretty cookie-cutter, which is unfortunate. But many of them seem to do their job well. So I don’t want people to be too anxious, but it’s good to pay attention, especially when care first gets going.
If I may give you a thought in response to your advance directive planning: I myself have found that many people are impaired or non-verbal at some point during their hospice time, and some of these people seem to have been in pain (or had health circumstances that we’d expect to cause serious pain, such as tumors or recent fractures). So I worry a little about you specifying that you can only be given pain medication if you request it, because what if for some reason you end up in pain but unable to clearly express yourself? Just a thought for you to consider…
Kathleen Ketter, DVM says
Thank you so much Doctor for this excellent article. Your follow-up is especially appropriate. As a veterinarian, I am always an advocate for non-talking patients. Pain and it’s evaluation is always a challenge. I hope for myself that medical personnel in charge will assume that I am in pain if certain conditions are present and will medicate me accordingly. As a result of your article I am going to rewrite my healthcare support documents and will interview and pick a hospice group now.
Leslie Kernisan, MD MPH says
I’m so glad you found this article helpful. I’m sure the hospice group and your healthcare proxy will appreciate your providing them with additional information regarding your care priorities.
Kim says
Another challenge from the clinician side is recognizing the key family members to make sure all involved know the plan. My experience frequently has a lot of family members with slightly different expectations possibly getting and giving information to the clinical staff. While hospice can assist families with the dying patient, they sometimes get caught in the communication cross fire of slightly different family expectations of care for the dying patient.
Leslie Kernisan, MD MPH says
Yes, absolutely true.
This also comes up for clinicians during hospitalizations, and can even be an issue in the outpatient setting…basically any health situation that might cause alarm in multiple family members, especially if those family members don’t regularly talk or have differing opinions as to how the older person should be helped.
I certainly have found myself struggling to manage communication issues, because it can take a lot of time and effort, especially when multiple parties are involved.
Thanks for bringing up this point.
rosie says
I think you mean that you don’t worry unless the breathing rate is less than 10 per minute – not per second!
Leslie Kernisan, MD MPH says
yes of course 🙂
I have made the correction. thank you for catching that!
Marga Ricci says
You left out the most basic and fundamentally important issue and right patients and their POAs (acting on the patient’s behalf when the patient can’t make their own medical decisions) have in all health care environments under Federal and State Law…..INFORMED CONSENT!
Leslie Kernisan, MD MPH says
Informed consent is certainly very important. That said, it’s usually emphasized before surgery, medical procedures, and research. It’s much less commonly explicitly sought before prescribing medication.
In fact, whether patients should be informed when providers prescribe a medication off-label is currently a topic of debate:
Informed Consent for Off-Label Use of Prescription Medications.
I’m sorry to say this, but I don’t think it’s safe or reasonable for patients and families to assume that health providers will solicit their informed consent before prescribing or administering medications. I wish they would, but historically they haven’t and it’s not going to be common practice any time soon.
So it’s important for families to ask lots of questions and indicate that they want to be informed and involved.