Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned

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:
  • About Hospice Care
  • Facts on Hospice and Palliative Care

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.

1. Patients with dementia should show all the following characteristics:
   1. Stage seven or beyond according to the Functional Assessment Staging Scale;
   2. Unable to ambulate without assistance;
   3. Unable to dress without assistance;
   4. Unable to bathe without assistance;
   5. Urinary and fecal incontinence, intermittent or constant;
   6. No consistently meaningful verbal communication: stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words.
2. Patients should have had one of the following within the past 12 months:
   1. Aspiration pneumonia;
   2. Pyelonephritis;
   3. Septicemia;
   4. Decubitus ulcers, multiple, stage 3-4;
   5. Fever, recurrent after antibiotics;
   6. 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:
    • Differences in Care at For-Profit Hospices
    • Dying and profits: The evolution of hospice

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!