Dementia hospice, medication and what to do if you're worried (2023)

Q: Dear Dr. K,

With all the news about opioids and benzodiazepines and their risk of death, I'd love to hear your thoughts on the use of these drugs in hospice.

We have already had two family members (my mother and aunt) put these drugs on right away when they went to hospice...without hospice trying anything less dangerous first. My mother was up and walking around the memory care institution one day, even laughing. The next day, when the hospice put her on morphine and Ativan, she was in a coma. She died 13 days later and never regained consciousness. When I protested and asked why she wasn't waking up, the hospice nurse said, "It's not the medicine, it's the disease." (Mom had dementia). The nurses wouldn't let us give her fluids (“You don't want your mom to sniff you, do you?”) or feed her (“You don't want your mom to choke, do you?”). ?”).

With my aunt, she was also in the memory care unit and it got to the point where she needed the help of two people. Her power of attorney (POA) had the option of moving my aunt to a nursing home or placing her in hospice. The hospice immediately gave her morphine and Ativan, then withdrew the Ativan and gave her morphine every two hours until she died 3 days later.

Now the third sister, also with dementia, has been hospitalized for two months and counting. She is clear most days, eats/drinks, comfortable, all without the opioid/benzo combination, in our experience.

How can family members spot a hospice that doesn't use this worrisome combination of medications early on, without first trying something less dangerous to make the patient "comfortable"?

A: Thank you for submitting this question. I am very sorry to hear that his experiences with asylum have concerned you.

In fact, it is extremely common for hospices to use morphine and lorazepam (brand name Ativan) to treat end-of-life symptoms. This is because many people in hospice care experience worrisome symptoms that these medications can alleviate, such as pain, shortness of breath, anxiety, and agitation.

Still, these medications are not always necessary. They should be prescribed and used as needed to relieve the dying person's symptoms, not by default. So the situation you describe with your mother and aunt seems potentially concerning. At the very least, the hospice staff should have done a better job of discussing the proposed plan of care with your family.

Now, let me be clear: I cannot say whether the way they prescribed morphine and lorazepam was inappropriate or not, because it is impossible for me to know the details of your mother's and aunt's medical situation.

Still, we can certainly review some basics about palliative care for people with Alzheimer's and related dementias, as well as recommended best practices, when it comes to using opioids and benzodiazepine sedatives.

This is what I will cover:

• Hospice Basics
• 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 are concerned about the care your family member receives while in hospice

The foundations of the asylum

Hospice, as you may already know, is a package of palliative care services specially designed to help dying people and their families. Medicare covers hospice services for the elderly if a doctor can certify that the person is likely to die within six months.

Palliative care generally includes the following:

• Clinical services to meet the physical, emotional, social, and spiritual needs of the terminally ill person.
  • This is provided by a multidisciplinary team, which typically 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 doctor oversees the health care plan and can help with particularly difficult medical problems.
• Special care and expertise in managing difficult or uncomfortable symptoms.
  • Hospice doctors typically have experience managing symptoms such as pain, shortness of breath, anxiety, constipation, nausea, agitation, and many others.
• Focus on optimizing quality of life.
  • Palliative care teams must enable the dying person to have the best possible quality of life for their remaining time. Most hospice doctors have been trained to talk to patients and their families about what is important to their quality of life.
• Support for family members.
  • Palliative care includes counseling and support services for the patient's family, who are often very involved in the daily care of the dying person. Grief support is also often available.
• Medical supplies and equipmentsuch as a hospital bed or wheelchair.

Medicare hospice services are provided by accredited agencies or organizations. Sometimes they are part of a home health agency, nursing home, or other larger health organization. They can be non-profit or for-profit.

Hospice services may be provided in the patient's home, in a nursing home, or in a nursing home. They may also be provided in special inpatient or residential hospitals.

For more information on palliative care, see:

• Kaiser Health News:Learning about palliative care should start long before you get sick.
• Medicare.gov:How hospice works
• SiguientePasoEnCuidado.org:Family Caregiver's Guide to Hospice and Palliative Care
• National Organization for Palliative Care and Hospice:
  • About palliative care
  • Facts about hospice and hospice care

I think families tend to find hospice services extremely helpful. Probably because the hospice sends the nurses and other healthcare workers home, very convenient for families! — and addresses symptoms and difficulties that primary care providers may not be equipped to help. The hospice also usually provides a 24-hour number that you can call if you have questions or need help.

Hospice for people with dementia

Hospice services are intended to provide support and assistance, regardless of the disease from which a person is dying.

That being said, in the early days, hospices primarily cared for people dying of cancer rather than people dying of a slow, terminal disease like Alzheimer's disease. It is for this reason that some features of the Medicare hospice benefit, such as the six-month prognosis, may be more appropriate for the diagnosis of cancer than for other terminal illnesses.

Today, it has 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.Look forshows that in people with advanced dementia, palliative care generally improves care and symptoms at the end of life.

A challenge in initiating hospice services for people with dementia is that it can be quite difficult to determine when a person has reached a 'six-month prognosis' (ie they are unlikely to live more than six months). This is because Alzheimer's disease and other dementias tend to progress much more slowly than advanced cancer.

Medicare Guidelines on Hospice Coverage for People with Alzheimer's Disease

Medicare provides some guidelines for doctors to help them determine when a person with dementia may have reached a life expectancy of six months. This is an excerpt from Medicare's Guide to Determining Hospice Status (LCD L33393):

Patients will be considered to have end-stage dementia (life expectancy of six months or less) if they meet the following criteria.

1. Dementia patients must have all of the following:
   1. Stage seven or higher on the Functional Assessment Staging Scale;
   2. Unable to walk without help;
   3. Unable to dress without help;
   4. Unable to shower without assistance;
   5. Urinary and fecal incontinence, intermittent or constant;
   6. No consistently meaningful verbal communication: only stereotyped phrases or the ability to speak is limited to six or fewer intelligible words.
2. Patients must have had one of the following in the past 12 months:
   1. aspiration pneumonia;
   2. pyelonephritis;
   3. Septicemia;
   4. Bedsores, multiple, stage 3-4;
   5. Recurrent fever after antibiotics;
   6. Inability to maintain adequate fluid and calorie intake with 10% weight loss over the previous 6 months or serum albumin < 2.5 g/dL.

(For more information on the FAST scale for dementia, see.)

Of course, people with dementia often have other serious illnesses, such as cancer, advanced heart or lung disease, or end-stage renal disease. Therefore, older adults often become eligible for hospice care before their dementia reaches very advanced stages.

But in the absence of other advanced illnesses, if a person with dementia is eligible for hospice care, it usually means they have severe dementia. At this stage of dementia, the person will have lost the ability to speak to a great extent and will no longer be able to walk.

How opioids can help at the end of life

Look forshows that certain symptoms and difficulties are common in people with very advanced dementia (whether or not they are in palliative care). These include:

• Aspiration and other swallowing difficulties
• Pneumonia
• Febres
• Shortness of breath
• Insect

Most people know that opioid medications, such as morphine, are effective pain relievers. For this reason, they are often used to treat pain at the end of life.

But people sometimes don't know.Opioids have also been shown to help relieve shortness of breath.So, in hospice, a drug like morphine can be used to relieve two common end-of-life symptoms: pain and/or shortness of breath.

Now, opioids do have some downsides. We don't tend to worry too much about addiction in terminally ill people. (I am more concerned about whether someone in the household might want to use, or sell, these drugs.) But opioids 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 becomes too slow, they end up with too much carbon dioxide and too little oxygen in their blood, which can cause death. (This is how people who overdose on narcotics can die.)

Now, people in hospice care are expected to die. But that doesn't mean we want to rush things with medications; they should die of their disease, not because we have overmedicated them.

To walk that fine line, hospice physicians must focus on treating distressing symptoms with enough medications to provide adequate relief. With careful attention and titration of the medication, it is usually possible to provide relief without greatly decreasing a person's respiratory rate. (I usually don't worry too much as long as the person's respiratory rate is at least 10 breaths per minute. Terminally ill people often fall asleep when we treat their pain or shortness of breath, but this is usually due to to finally getting some relief from their symptoms!)

Because people with advanced dementia often appear to be in pain, it is reasonable to treat this pain later in life with morphine or another opioid pain reliever. However, the dosage must be carefully controlled and it is essential to manage any associated constipation or other side effects.

The American College of Physicians addresses opioid use in old age here:Evidence-based interventions to improve palliative care for pain, breathlessness, and depression at the end of life: a clinical practice guideline..

Benzodiazepines in end-of-life care

Benzodiazepines such as lorazepam (trade name Ativan) are very commonly prescribed in palliative care. Usually, the order says to give 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.

Interestingly, although benzodiazepines are used very commonly in palliative care, there really isn't much clinical evidence on how to use them beneficially, especially in older people dying of dementia.

Avery interesting study published in 2016surveyed palliative care physicians on the use of and attitudes toward the use of benzodiazepines in palliative care. The authors also conducted an extensive review of clinical research on benzodiazepines in palliative care.

The authors found that most hospice physicians use benzodiazepines frequently, despite little clinical evidence of potential benefit and harm (especially for elderly hospice patients).

The authors also noted that palliative care physicians have reported the use of benzodiazepines to treat delirium, although clinical research generally suggests that benzodiazepines may cause or worsen delirium. (If medication is absolutely necessary for the delirium, geriatricians often prefer to try a low-dose antipsychotic, as I explain.here.)

In summary, although benzodiazepines are widely prescribed and used in hospice settings, it is not clear that their use is always strictly necessary, or even the best option to control certain symptoms.

How to choose a hospice provider

Palliative care is ultimately like all medical care in that it is best delivered by doctors:

• They have received appropriate training and provide care based on the latest best practices,
• They are able to tailor the care plan to the patient's needs and symptoms (rather than always resorting to a standard set of doctor's orders),
• They are able to communicate skillfully with patients and families.

Death and dying become quite familiar to hospice physicians. But it's usually new, scary, and emotionally charged to the family watching it. So ideally, hospice doctors should be able to help families understand why a particular approach might be a good way to help the patient achieve their goals.

In the question, she mentioned that the nurses did not allow her to give her dying mother fluids or food. This may have been medically reasonable, but if so, she should have been given better explanations to make her feel better about this course of action.

For example, the dying often need less fluids and food than the family is willing to give them. This is because increasing fluids and food may not improve your comfort or your dying experience, but may actually cause nausea and distress.

In my own experience serving in a hospice unit, I have found that families are often too anxious to feel like they are doing things to help and support their dying loved one. They also usually needed reassurance that they, or the hospice staff, were not harming or disappointing their loved ones.

So how do you find a hospice team that provides excellent care for your elderly relative with dementia and their family?

This is what I recommend:

• Do some research on hospice agencies serving your area..
  • Use a worksheet to make sure the hospice agency is accredited and to get answers to important questions. The National Organization for Hospice and Palliative Care has a good one here:choose a hospice.

• Ask friends and family about their experiences with local hospice agencies..
  • If other people find the hospice agency responsive and caring, that's usually a good sign.

• Ask your regular doctors for a recommendation..
  • This can be especially helpful if your primary care doctor is the loving and caring type.
  • But keep in mind that busy doctors may not listen to feedback on how the hospice agency has treated their patients. Many doctors simply refer to whatever provider is most familiar or convenient to them.

• Consider if the hospice service is not-for-profit or 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 information, see:
    • Differences in For-Profit Hospice Care
    • Dying and Profiting: The Evolution of Hospice

I often encourage families to search for all available hospice agencies in their area, including for-profit agencies. But I think it's important to be aware of the concerns that have been raised about for-profit hospice agencies.

What to do if you are concerned about the care your family member receives while in hospice

If you have the energy to do this, I recommend that you first be proactive early on in hospice care. In particular, I recommend:

• Ask to see what medications are prescribed, and under what circumstances will they occur.

• Bringing Any Worriesyou may have in connection with the use of opioids or benzodiazepines.

• Clarify your family's goals and priorities regarding medication use.
  • For example, you can specify that while pain control is really important, you would like to minimize sedation and keep your loved one as alert as possible.
  • Since benzodiazepines are generally not the best way to manage people with dementia, you might consider asking that they be kept to a minimum.

You should also know that many hospice agencies use pre-made templates to prescribe medications. These models often include orders to deliver morphine as needed and also lorazepam as needed.

You can see a sample palliative care request here:Initial requests for hospital admission and medical comfort.

As you'll see if you look at the ordering template, "as needed" orders generally give nurses quite a bit of latitude in how much morphine and lorazepam they can administer. Therefore, it is important to mention your goals and priorities regarding medication use right away. This will allow the nurse to better calibrate her care to the needs and preferences of her elderly loved one and her family.

If you have concerns about the hospice care provided

If you feel worried once hospice begins, here are some things you can try:

• Take your concerns to the nurse. You will want to give him the opportunity to communicate better with you and perhaps make some changes in care.

• Ask to speak to the supervising doctorHospice agencies will have a medical director. That person can help get care back on track. You can also try talking with your loved one's regular doctor, especially if that doctor has been involved with or has experience in geriatrics.

• Share your concerns in writing with the hospice agency. Written concerns may carry more weight than those expressed verbally. This can help you get the extra attention the agency needs to resolve a communication problem or other problem.

• Switch to a different hospice provider.In accordance withMedicare.gov, you have the right to change your hospice provider once during each benefit period. (Hospice benefit periods are initially 90 days and change to 60-day periods after 6 months.)

• Consider filing a complaint with state or federal authorities.. It's less about improving your own family member's care and more about reporting an agency that may be providing inadequate care to another. You can find a list of agencies to consider contacting here:Make a claim about hospice.

Serious truths reflected in these questions and answers

In fact, the concerns described in this question make me a little sad. I know that most of my healthcare colleagues really do go the extra mile to help the patients and families they work with.

But it's still all too common for patients and their families to find themselves with poor medical care. Health professionals are often unable to communicate and partner with families in the ways we would like. And they may not be up to date with the latest clinical evidence or best practice.

In short, health often implies good intentions, but often poor execution.

It is important not to place too much blame on individual health care providers for this. Most of the time, they are doing the best they can. But they're stuck working within a system that simply doesn't provide the support, resources, and time 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 it, it's usually a good idea to do a little homework and ask questions about the health care you or your elderly loved ones are receiving. receiving. he.

Hospice is an important and valuable service to the dying and their families.

Note: I will no longer approve or respond to comments on this article.Thanks for reading, I hope you found it useful!