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
- HelpGuide.org: Hospice and Palliative Care.
- 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.
Questions or comments about hospice care for people with dementia? Post them below, I’m happy to help you learn more about this topic.
I think you mean that you don’t worry unless the breathing rate is less than 10 per minute – not per second!
yes of course 🙂
I have made the correction. thank you for catching that!
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!
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.
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.
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.
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!!
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…
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.
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.
Great article. Thanks for all the good information and your honest opinions toward the end. Much appreciated.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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!
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.
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 !
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?
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!
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.
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!
Dr. Kernisan thank you for this website as its invaluable to us as caregivers who have been submersed into a caregiver role by choice or not. Many of us are trying to educate ourselves on dementia and coping skills and best safe medicine and its sites like your that is helpful.
My father had late stage dementia and passed away January 2018 from kidney failure. We put him in a longterm hospital facility for 10 days July 2017, 3 months after my mom had stroke. At home he was on Aricept for his brain and on Seroquel 25 mg twice day and 100mg at night for aggression and to help him sleep at night.
After placing him at longterm care hospital facility the doctor put him on HALDOL without informing us or asking permission and the head nurse informed us of this 2 days later. I asked for a meeting immediately and 2 days later met with Doctor, social worker and head nurse where I asked the doctor why he felt my father needed such a heavy drug. He indicated aggression which really all he needed to do was increase his Seroquel because we knew that worked. I indicated that we would prefer him to take my father off the medicine but he refused. We took him out the next day. My father was not put on the haldol while I was there for 5 days but put on it a day I wasn’t there.
He was in longterm care for a total of 10 days we took him out and brought him back home. He was very, very sick from this medicine. We took him to emergency the first night home because he had pneumonia like symptoms ( another danger of this medicine who is prone to pneumonia) but his lungs were clear so his own doctor gave him a bacterial antibiotic medicine to clear up any infection somewhere else in his body. It took us 2 weeks to nurse him back to health. I feel that he would have died there in a short time had we not gotten him out.
After experiencing Haldol medication given to my father in longterm care without our knowledge or permission I would not recommend it. It’s dangerous for elderly patients and has a warning on label that it can cause sudden death and sudden kidney failure.
Another point, about a year and half before he passed we gave my father cold pressed coconut oil in his foods. It seemed to work and he did regain the ability to speak more coherently.
It’s worth a try,
Thank you for sharing your story. I’m sorry you had to go through these challenges during your father’s last years.
Haldol (generic name haloperidol) is a “first-generation” antipsychotic and Seroquel (generic name quetiapine) is a “second-generation” antipsychotic. Generally second-generation antipsychotics are less likely to cause certain side-effects than the earlier medication such as Haldol, although the risk of death warning applies to both types of antipsychotics.
I agree that it’s too bad the doctor in the facility tried to treat your father’s agitation with a second type of antipsychotic, rather than increasing the dose of the antipsychotic your father was already used to.
Of course, the best approach is to try to manage agitation WITHOUT chemical restraints or increasing their dosage. I have more on how to do this for people with dementia in this article: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
That is interesting regarding the coconut oil. Some basic science research does suggest that coconut oil might protect or improve brain function, and I believe that research studies with Alzheimer’s sufferers are in process.
The role of dietary coconut for the prevention and treatment of Alzheimer’s disease: potential mechanisms of action
I’m glad you are informing yourself regarding aging health issues. Take care!
One important note for all of your readers that I noted in caring for my father on agitation is that when I would notice he was becoming angry and agitated, he was hungry. I would feed him right away and his angry would go away. It was like turning off a switch!
I have just read the account of the dear lady who had two deaths in her family because of morphine prescribed by Hospice.
I have just lost my mother after 28 days in the Hospice program and have experienced a similar situation. My mom was able to function in the bathroom at her nursing home with assistance, but as soon as the Hospice program was started morphine was started.
My mom went from Tylenol one day to morphine the next when Hospice came into the picture. Also she was working out light exercise on a bike daily in restorative care before that.
My request to allow her to go back to restorative care went silent by Hospice and her room became a death chamber. She was never allowed to leave her room after that. I am angry!
I only wish that I had asked for a blood sample from the funeral home following her death so that morphine levels could have been quantified.
I’m thinking seriously of writing an article entitled “Killing Mom” “Morphine and Hospice”
I am very angry!!
I am so sorry for your loss and for the experience you had. It’s hard to know just what happened, but it sounds like they did not do a good job supporting you and working with you.
There might have been some honest misunderstandings and miscommunications, but it’s also possible that this is hospice that is not being well run. You may want to consider writing letters and registering a complaint. This might be more effective than writing an article, in terms of holding the hospice accountable for the quality of care provided.
And of course you can be angry at this time…you are mourning your mother and had what sounds like a lousy experience with her hospice care. I don’t know whether writing an article is the best approach, but I would certainly encourage you to talk to others and find ways to keep working through your anger and grief. Good luck and take care.
As a home care CNA I have seen too many cases where a patient was up and about one day but as soon as hospice came into the picture they literally “pushed” Morphine/Ativan cocktail for no good reason at all and sure enough it worked all the time! Hospice care by default and not necessarily tailored to meet every individual patient’s needs is dangerous to say the least. I overheard a conversation between a hospice nurse and her assistant… talking about a hospice patient “who needed to die already… and it was ridiculous that he hadn’t!” I thought that was totally cold and I would expect such a statement only from the grim reaper and not from two people who always make families believe they really care! I’m sure some patients who are already in the FINAL stage of dying can benefit from hospice care but UNTIL then, families should be careful about hospice because the truth is that they lean toward rushing the death of your loved ones! That’s my experience.
Agree that hospice care should indeed be tailored to an individual patient’s medical situation and needs. I think most hospice teams use medications appropriately but there certainly are cases in which it seems that perhaps more sedating medications were used than were absolutely needed.
I do think that families often have a good experience with hospice; they tend to find the extra services and support very helpful. So I prefer to not discourage families from considering hospice altogether. Instead, I think it’s best to remind them that it’s always a good idea to ask questions, check on things a bit, and speak up if you have any concerns or priorities regarding what type of medical fits with your loved one’s preferences.
My father was given lorazepam and morphine yesterday afternoon, and he’s been pretty much out of it ever since then. He was awake long enough to have his diaper changed, and his sheets changed, but I can’t get him to stay awake long enough to eat or drink anything. He’s had two sips of water so far. He also has a fentanyl patch. I’m concerned about the amount of people commenting here, that their relatives were given those two drugs and immediately went downhill. I don’t want that to happen to him. He was his version of normal before that combination was given to him. He is fairly fine using morphine alone, despite the fact that he claims it doesn’t work. I think I’m going to insist that the lorazepam goes back into the emergency bag, and not in his mouth.
If you’re concerned for any reason then yes, it should be reasonable to try giving just morphine and seeing how he does. If he still looks uncomfortable or is having symptoms, you can talk to the hospice team about whether it would make sense to try more pain medication (or something else to manage his distress) versus adding the lorazepam.
When people are on hospice, it can be hard to tell whether they’re becoming out of it due to their illness progressing or not. Going slowly with the medications is usually reasonable. Good luck and take care!
I came across an article about a randomized, double-blind crossover trial of morphine as an aid to breathing that showed morphine is NOT a useful treatment for breathlessness. I would be glad to share the citation with you and others. Almost all the subjects suffered adverse side effects from the morphine.
Please do share the citation so that I and other readers can evaluate it. I have cited in the article a Cochrane review article, which covers multiple studies, and they concluded that there is some evidence supporting opioids for breathlessness.
I am very concerned about the treatment my loved one recently received at an inpatient hospice facility. The staff came out to her home to evaluate her in the second week of July. Until that time, she had been mobile, eating small amounts, drinking, laughing, and interacting quite a bit. She was showing signs of dementia and was unable to regulate her own medication at this time. She was also having anxiety related to her breathing (COPD), but seemed to be coping fairly well. She had always been the restless type, never sitting still for any length of time. Once hospice evaluated her, they started her on Ativan and Morphine the first day. She had a sudden onset of hallucinations that we had not seen in her before. We tried to alert the staff that this was unusual for her and had just occurred since the drug change. The staff members told us this was normal and attributable to her metastatic cancer. However, she was showing symptoms suddenly, and this was the staff members’ first experience with her. My loved one was then admitted to hospice inpatient care. After approximately two full days, the staff recommended heavy intermittent sedation citing the patient’s terminal restlessness as the basis for this drastic increase. My loved one was trying to get out of the bed and saying that she wanted to go home. She had always been tenacious and had never wanted to stay in one place for long, especially not in bed all day, so this was very much in line with her personality. Also, it was an intermittent occurrence. Other times she could be sitting still, interacting with a visitor, laughing and listening to music. A pastor even made the comment that she calmed down when he put his hand on her shoulder. When asked if she was in pain, her answer was always “no.” We again thought that the Ativan may be contributing to some of the behavioral symptoms. The staff refused to listen to our concerns and a family member agreed to allow them to add medications to counteract her restlessness. To me this appeared to be an attempt at chemical restraint. I would describe this stage as intermittent palliative sedation. After five days, the staff requested the addition of an analgesic drip of Ketamine. Along with this, our loved one’s opioids were increased, as were most of her other scheduled medications. When a few family members questioned the nurse about specific medications, she became defensive and kept repeating and defining the term “terminal restlessness.” At this point the nurse finally told us that our loved one was being given Haldol, Ativan, Morphine, Methadone, and Ketamine. Before the Ketamine drip was administered, despite all of the other drugs, our loved one was still enjoying some quality time with visitors, drinking, and eating a small amount. After the staff added the Ketamine, our loved one became barely responsive and began aspirating anything by mouth. She died nine days later. Our loved one was in this facility approximately two weeks. Many of the family members are not aware of the details concerning the medications she was given. Therefore, they simply saw her decline and was told by staff that it was attributable to her illness. I was a true supporter of hospice due to my experience working with a hospice organization 20 years ago, but am seriously questioning the apparently “one size fits all” treatment plans, staff condescension toward family members when they ask questions or challenge them, and the power that doctors and nurses have to use terminal restlessness as a basis for continuous palliative sedation. This has been a horrifying experience for me, and I no longer trust a hospice to care for me or another loved one. I also do not know how to prevent this from happening to others. Most of my family members are completely ignorant of the details of this process and are therefore satisfied with the hospice care. The facility is lovely, clean, and the staff members know just what to say in order to deflect any meaningful questioning. There is a clear “we know what’s best” attitude. Many family members, at such a time, are so emotionally overwhelmed that they completely trust “the experts” to care for their loved ones and are too confused and/or tired to ask technical plan of care questions. I do not feel that what I witnessed is right. I do not feel that my loved one would have appreciated being treated this way, and I don’t want this to happen to others.
Sorry to hear of your experience, it does indeed sound concerning and very distressing. I agree that one should always be careful about “one size fits all” approaches and it’s important to be ready to participate, ask questions, and advocate, when it comes to all medical care, including hospice care. I also recommend asking to speak to the medical director or someone in a medically supervisory position, if you have concerns about the medications the nurses are administering.
I will also say that ideally, only one person from the family should be agreeing to medications and otherwise acting as the ill person’s representative. It is very difficult for medical personnel when they get conflicting requests or concerns from different family members.
I can’t say whether what they did was “wrong” or not, but given your concerns about your family’s experience, you could consider taking some of the steps I share in the article, to further report your concerns to the leadership of the agency and perhaps also to other authorities.
Sorry once again for your loss and for your disappointing experience. I do think that most hospice experiences go well, but when they don’t, it’s good to speak up so that the agencies can improve their work.
This is exactly what happened to my mother in hospice. She had dementia. She went in on a Friday, and I was assured that she was strong and still had many weeks left. Soon after arriving, the nurses said she had taken a sudden downturn. On Monday afternoon, I was sitting with her when the nurse came in to give her medication. I was told it was Ativan and morphine. She was dead by Tuesday at 5 am. For all intents and purposes, it was euthanasia, and I am sick that I did not realize what was happening right in front of my face.
Sorry to hear about your mother’s rapid decline in hospice, I can see how that must have been upsetting for you.
Euthanasia is a strong accusation, however…that would mean that they gave her medications with the actual intent to cause death. Frankly, I think that is highly, highly improbable. It’s possible that she did experience some kind of medical downturn that tipped her into a quick final decline. Also possible that the hospice staff gave her more morphine and lorazepam than was strictly necessary for symptom control…and I suppose possible that this slowed her breathing down excessively. She may have died sooner than she would have without taking these medications at the doses given, but that is still not euthanasia because it was not the intent of the hospice staff to hasten her death.
I guess what I am saying is that I don’t think the intent was to hasten her death. There may or may not have been overuse of the morphine or lorazepam, I can’t say. It does sound like your mother had a comfortable peaceful death, but it also sounds like you would’ve liked to have her with you for longer, or at least you want to feel that she didn’t die due to the medication use.
If you think the actions the hospice staff took were inappropriate, then you may want to report your concerns, I have shared some ways to do in the article. This might help the hospice review its training and procedures.
I’m sorry once again for your loss and that your hospice experience wasn’t a positive one. Thank you for sharing your story.
My grandmother was in hospice as well. She was in there prolly going on a week and a half now and she died this a.m.. I truly think my grandmother would still be here if they didn’t give my grandmother so much Morphine and Ativan. How is it that oneday she talking, writing her name, singing and etc and the next day she is just out of it?! It just seems like everytime we left her unattended she was out of it like the gave her morphine or something. The night and days we stay with her she talking and alert but the days we not she sleeping and out of it. She was 101yrs old. I think the could of gave her less morphine. I was told they gve her 2 doses of morphine that day and then another 2 doses of it all in the same day. Wayyyyyyyyyyyy to much! I really do believe that was the cause of her death at hospice. It wasn’t another drug they could had have my gma for the agitation? She never said she had pain the whole time she was there. Just shortness of breath and she was bleeding in the inside but some days that would stop and be perfectly fine.
Sorry for your recent loss. As I mention in the article, morphine does seem to help many people with shortness of breath, so that may be part of the reason why your grandmother received it while on hospice.
It’s impossible to know whether she was given too much or not. I certainly think it’s always good to “start low and go slow” when it comes to dosing most medications for older adults, esp if they are over 100.
Hopefully she was comfortable at the end. Best wishes for your period of grief and mourning. Even when it’s expected, it’s very hard to lose a loved one, and even harder if one has questions about the medical care provided during the last days. Take care.