“Palliative Care/Hospice Care Planning” (for those with Lewy body dementia) – Webinar Notes

“Palliative Care/Hospice Care Planning” (for those with Lewy body dementia) – Webinar Notes

In mid-March, Columbia University’s Taub Institute hosted the webinar “Palliative Care and Hospice Care Planning” with neurologist Dr. Reena Gottesman. Dr. Gottesman described when palliative care and hospice care are appropriate, and focused on palliative care and hospice care for those with dementia and advanced dementia.

This webinar was part of a four-part series on Lewy body disorders hosted by the Taub Institute at Columbia University.   In this series, the term “Lewy body disorders” was used rather than the term “Lewy body dementia.” Lewy body dementia includes both dementia with Lewy bodies and Parkinson’s disease dementia.

Palliative care is care that adds to routine medical care by focusing explicitly on suffering and distress due to serious illness.  For palliative care, neurologists and palliative care specialists work together to talk about the values and goals of the patient so that treatment decisions are in line with what is important to them. Additionally, they will have conversations about advanced care planning and manage complicated situations.  

In comparison, hospice is part of palliative care, with a specific focus on end of life (six months). If a person is unable to live independently any more due to major declines in the ability to speak, eat, walk, and talk, this person is appropriate for hospice care. .  

For more information on palliative and hospice care for Parkinson’s, see the Stanford Parkinson’s Community Outreach webpage.

The webinar recording can be found here.

Please see below for notes on the March 11th webinar.


– Joëlle Kuehn

“Palliative Care/Hospice Care Planning”

Speaker: Reena Gottesman, MD, neurologist, Columbia University Irving Medical Center

Webinar Host: Columbia University’s Taub Institute

Webinar Date:  March 11, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

What is palliative care?

  • Care that adds to routine medical care by focusing explicitly on suffering and distress due to serious illness
    • Suffering and distress can be physical, emotional, or decisional
    • Focus on patient goals and values
    • It is a multidisciplinary approach to care
  • Can be provided by treating neurologist, palliative care specialist, or any member of medical team.  Often done in conjunction with social worker and other medical professionals 
  • By default, much of medical care in Lewy body disorders (LBD) is palliative because of the lack of disease modifying therapies
  • Is provided in conjunction with medical care.  As time progresses after a diagnosis, the amount of palliative care tends to change

What happens with palliative care?

  • Neurologists or other treating physicians can:
    • Talk about the values and goals of the patient so that treatment decisions are in line with what is important to them
    • Have conversations about advanced care planning: talking about what to expect, identifying a decision surrogate (or healthcare proxy), planning for situations when the patient might not be able to decide for themselves, with a focus on the values and goals of the patient
    • Address most symptoms that come along with the illness such as cognitive impairment, depression, and anxiety
  • Palliative care specialists can: 
    • Do most of the above
    • Manage complicated situations (when overall goals aren’t clear, or if difference of opinion in a family and difficulty making decisions)
    • Help with difficult to treat pain, physical symptoms, and depression
    • Provide an added layer of support for coordination of care

What research shows on benefits of palliative care:

  • Automatic palliative care consultations for hospitalized patients with advanced dementia results with:
    • More physical and psychiatric symptoms and spiritual needs addressed
    • More family caregiver education
    • More family caregiver participation in discussion of prognosis and goals of care
    • Less likely to be discharged to a nursing home
    • Note: no effect on rehospitalization rates
  • The goals of care videos and discussions with nursing home teams for patients with advanced dementia result in:
    • Caregivers perceived greater agreement with the medical team regarding primary goal of care
    • Patients about half as likely to be transferred to the hospital, without differences in mortality over 9 months
  • Integrated palliative care in outpatient care of patients with PD and related disorders resulted in:
    • Intervention was integrating a palliative care visit every 3 months alongside routine care with neurologists – caregiver support, guidance, symptom management, addressing emotions
    • Decreased caregiver anxiety, improved quality of life
    • Improved motor and nonmotor symptoms
    • More likely to complete an advanced directive
    • No difficulty in health care usage, cognition


  • Hospice = part of palliative care, with a specific focus on end of life care
    • Intended for last 6 months of life
    • Can be renewed after 6 months if the patient is still considered to be at end of life
    • Must be certified by treating physician
    • Can be given at home or in a hospice facility
    • Once enrolled, provides access to 24/7 care
    • Can be stopped at any time 
  • Hospice and its associated services are covered benefits by Medicare Part A
    • Associated services include: care from doctors and nurses, needed medical supplies or medication for pain or other symptoms associated with the disease, spiritual counseling
    • Minimal copays

Hospice Referral Criteria for Dementia:

  • To be eligible, people with advanced dementia should be at at least stage 7c (there are 7 stages – at stage 7 they are not independent in daily living anymore and they start to decline in ability to speak, eat, walk, talk) AND have one of the medical conditions in the past year:
    • Aspiration pneumonia 
    • UTI
    • Sepsis
    • Multiple pressure ulcers
    • Recurrent fevers
    • Insufficient oral intake
  • Clinician judgement of six months prognosis may also be sufficient

When is hospice appropriate:

  • Symptoms that might indicate that hospice is appropriate:
    • Diminished speaking
    • Inability to walk
    • Choking while eating
    • Difficulty with eating or drinking enough
    • Significant weight loss
    • Recurrent infections or pressure ulcers

How can you see a palliative care specialist or be referred for hospice care?

  • Talk to your neurologist or internist about a referral, and they can help to determine what is appropriate
  • Consultation with and treatment by a palliative care specialist (they have an additional certification in hospice and palliative medicine)  is treated like any other medical visit
  • Referral to hospice will likely involve referral to a social worker to assist with setting up the hospice evaluation and navigating insurance

Forms involved in palliative care and advanced care planning:

  • Health care proxy form:
    • Decides who the decision maker should be should the situation arise that you are not able to make decisions for themselves 
    • When someone is diagnosed with a cognitive disorder (such as lewy body disease), ideally it should be filled out early so that the healthcare proxy is known and conversations about what the patient wants is had with the appropriate person
    • Does not require an attorney, just two witnesses who are not the designated proxy (in New York – may be different in other states)
    • Designates a decision maker and can be used to document specific wishes
    • Note: can only be filled out while the patient still has the decision-making capacity to name a proxy (can be determined by a treating physician or may involve referral to psychiatry)
  • MOLST Form  [Editor’s note:  In California, this is called the POLST form.]
    • Medical form that documents a patient’s wishes
    • Complements a health care proxy
    • Must be completed by a medical professional
    • Filled out by doctor and consented by patient although decisions can be consented to by surrogate decision maker if patient lacks decision-making capacity
    • Should be re-reviewed periodically or during any transitional points in care

Some myths about palliative care and hospice:

  • Palliative care is only appropriate at the end of life
    • Can be appropriate in any stage of disease – it is need based, not prognosis based
  • Palliative care is only appropriate for cancer
    • It first arose due to needs of cancer patients, but it is appropriate for every disease and is increasingly used in other diseases

Questions & Answers:

Question: What is integrated palliative care?

Answer: It means palliative care is provided alongside other routine medical care. It can be accessed by getting a referral to a palliative care doctor, and seeing them on a regular basis.

Question: How can you keep a neurologist involved in care, especially when they sometimes want to prescribe medication that is not good for lewy body disorders?

Answer: In hospice care, most hospice care is directed and adjusted by the hospice organization. Hospice providers stay in touch with the primary treating physician (neurologist, internist, etc.) in order to direct the care in an appropriate way. There is a need for more education to bridge the gap between palliative care and hospice to know the specifics, but regular contact can help negate that issue. It is possible for the neurologist to stay involved.

Question: Where can people go to find forms in other states, because you listed forms for New York, what about for other states?

Answer: An attorney or the medical doctor should be able to get access to those specific forms. 

Question: What kind of treatment can a palliative care doctor recommend that a primary care doctor cannot recommend?

Answer: Palliative care doctors have expertise in treating things like pain, spiritual needs, and psychiatric distress. When it is the early stage, treatment can usually be done by the neurologist or primary care doctor, but in later stages the extra expertise and training can be helpful. 

Question: In a hospice setting, what kind of conversations can you have regarding the medications your loved one is taking (i.e. life-extending vs. quality-of life medications)?

Answer: Palliative care is given in conjunction with other therapies (modifying, life-extending, etc), anything palliative care will add is to help symptoms that life-extending medication doesn’t address or side effects, and is intended to increase quality of life while a serious illness is being addressed. Hospice is different because we are only talking about quality of life, and they will be in charge of medications, and can treat sleep disorders, pain, and other symptoms, but it is very individual.

Question: Is there anything palliative or hospice care can do to ensure you stay on a medication schedule despite swallowing problems? 

Answer: Swallowing difficulties are common in advanced stages of dementia. It depends on the individual’s circumstances, but we can consider if medication can be switched to a liquid form or crushed into a food item patients are able to swallow safely, but it also depends on if the medication has those available formulations. 

Question: Under hospice or palliative care, is it possible for a patient to still receive occupational or physical therapy?

Answer: It should be possible with palliative care. For hospice care, it depends on the circumstances but it should be possible depending on what it is needed for in respect to the patient’s disease. 

Question: In advanced stages of dementia, are there medications that are effective or is there a point that the medications you are taking for cognitive improvement don’t make much of a difference anymore?

Answer: Some medications we offer for dementia are specifically for advanced stages of disease, but once patients get to the point of very advanced stages, it’s worth having a conversation if it makes sense to pull back on medications that might not be providing much of a benefit anymore, especially if you are trying to simplify things or they are having swallowing difficulties. 

Question: What does palliative and hospice care look like given COVID?

Answer: You can see a specialist and get a referral over video for palliative care. For hospice is by definition an in-home (bringing care to the patient), but getting the referral or system for hospice set up shouldn’t be any different in COVID. 

Question: Is palliative care helpful in the early stages of dementia with lewy bodies, does it help to get started earlier?

Answer: Any time there are difficult to manage symptoms that are causing stress or that might need an additional level of support can be managed by palliative care. For early stages, it can usually be done by the treating physician and doesn’t have to be done by a palliative care specialist. 

Question: What services should a good agency provide for hospice and palliative care? What should you look for to identify a good palliative care doctor or hospice service?

Answer: A hospice by definition is meant to be very comprehensive and address all the needs of the patient, such as access to a nurse, or health care provider, regular visits to a doctor to update the care plan. A palliative care doctor will have training in the field and expertise, and the services should include social workers and nurse practitioners as part of the system of support, and they have the ability to make referrals just like any other doctor would.

Question: Are there any palliative care doctors or hospice care facilities that are Lewy body specific? 

Answer: To my knowledge there are no Lewy body-specific programs. There are a few programs called neuropalliative care that would be the closest to that.