Hospice Care for Neurological Diseases: Stroke, Coma, Parkinson’s Disease and Multiple Sclerosis

If you are reading this, it is likely that you or someone you love has been waging a difficult physical and emotional battle against a neurological disease. Your search for comfort, support and answers becomes more difficult when you face decisions about feeding tubes or breathing machines (ventilators). Reducing or discontinuing medical support affects the whole family. That’s when VITAS can help.

When is the right time to ask about hospice?

Some neurological diseases cause a slow decline over months or years. Others, like stroke, can cause abrupt loss of function. Either way, it can be difficult to determine when the time is right for hospice. In general, hospice patients are thought to have six months or less to live. When improvement is unlikely and a decision is made to discontinue the use of a feeding tube or breathing machine, hospice care for neurological diseases is likely to benefit the patient and family.

Only a doctor can make a clinical determination of life expectancy. However, look for these common signs that the disease has progressed to a point where all involved would benefit from hospice services:

Patients with stroke:

• Coma
• Persistent vegetative state
• Severely reduced level of consciousness
• Continual decline in clinical and functional status

Patients with coma

• Physical deterioration despite nutrition and hydration
• Desire to avoid feeding tubes and mechanical ventilation
• Patients with Parkinson’s or MS:
• Severe difficulty breathing
• Severe difficulty swallowing

All neurological diseases:

• Rapid progression to wheelchair- or bed-bound
• Barely intelligible-to-unintelligible speech
• Need for pureed foods
• Need for major assistance with eating and personal care, or total dependence on others for these activities

The patient’s neurologist or personal physician may recommend hospice when the time is right. But patients and family members often must act as their own advocates to receive the care they need. You, your loved one or your physician may request an evaluation to see if hospice is an appropriate option for care.

Are you a healthcare provider? Learn about the clinical characteristics of end-stage neurological diseases and download a PDF of our hospice eligibility guidelines.

What can hospice do for a patient with a serious neurological disease?

Your hospice team evaluates the patient’s status and updates the plan of care as symptoms and condition change, even on a day-to-day basis. The goal of hospice is to relieve physical and emotional distress so patients can retain their dignity and remain comfortable.

Hospice offers comprehensive services for patients with serious neurological disease:

• Pain control – People with neurological diseases may suffer pain from muscle cramps and spasms, stiff joints and immobility. Hospice specialists in pain management ensure patients are comfortable.
• Symptom control – Hospice helps manage difficulty breathing, difficulty swallowing, problems eating and drinking, difficulty communicating, pressure ulcers, anxiety and depression.
• Care for patients wherever they live – in their homes, long term care facilities or assisted living communities. If symptoms become too difficult to manage at home, inpatient hospice services can provide round-the-clock care until the patient is able to return home.
• Coordinated care at every level – A plan of care is developed with the advice and consent of the patient’s neurologist or other physician. A team manager ensures that information flows between all physicians, nurses, social workers and, at the patient’s request, clergy. In addition, hospice coordinates and supplies all medications, medical supplies and medical equipment related to the diagnosis to ensure patients have everything they need.
• Emotional and spiritual assistance – Hospice has the resources to help patients maintain their emotional and spiritual well-being.

What can hospice do for the family of a person with a serious neurological disease?

Family members may have to make difficult healthcare and financial decisions, act as caregivers and provide emotional support to others. If the decision is made to stop medical support, families experience strong emotions and feel overwhelmed.
Some of VITAS’ comprehensive services for families of patients with advanced neurological disease include:

• Caregiver education and training – The family caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication becomes more difficult. We relieve families’ concerns by educating them on how best to care for their loved one.
• Help with difficult decisions – Hospice helps families make tough choices that impact the patient’s condition and quality of life—for example, whether or not to give antibiotics for a recurring infection.
• A VITAS nurse by phone 24/7 – Even the most experienced caregivers will have questions and concerns. With Telecare, they don’t have to wonder, worry or wait for an answer. The heartbeat of VITAS after hours, Telecare provides trained hospice clinicians around the clock to answer questions or dispatch a member of the team to the bedside.
• Emotional and spiritual assistance – Hospice meets the needs of loved ones along with those of the patient.
• Financial assistance – Although hospice services are covered by Medicare, Medicaid/Medi-Cal and private insurers, families may have financial concerns brought about by their loved one’s extensive illness. Social workers can assist families with financial planning and finding financial assistance during hospice care. After a death, they can help grieving families find financial assistance through human services, if needed.
• Respite care – Caring for a loved one with advanced illness can cause tremendous stress. Hospice offers up to five consecutive days and nights of inpatient care for the patient in order to give the caregiver a break.
• Bereavement services – The hospice team works with surviving loved ones for a full year after a death to help them express and cope with their grief in their own way.

What are the overall benefits of hospice care?

If you or a loved one is facing a life-limiting illness, you may know about the specialized medical care for patients or the support services for loved ones. But most people are unaware of the many other benefits of hospice.

Comfort. Hospice gives patients and families the support and resources to assist them through this challenging chapter of life and help patients remain in comfortable and familiar surroundings. 

Personal attention. When the hospice team works with a patient or family, they become participants in the end-of-life process, a very personal experience. The hospice mission is to care for each person individually. We listen to patients and loved ones. We advocate for them. We work to improve their quality of life.

Reduced rehospitalization. In the last months of life, some people who are seriously ill make frequent trips to the emergency room; others endure repeated hospitalizations. Hospice care reduces rehospitalization: a study of terminally ill residents in nursing homes shows that residents enrolled in hospice are much less likely to be hospitalized in the final 30 days of life than those not enrolled in hospice (24% vs. 44%)¹.

Security. One of the greatest benefits of hospice is the security that comes from knowing that medical support is available whenever you need it. The VITAS Telecare program assures healthcare support around the clock. And VITAS gives families the training, resources and support they need to care for their loved ones.

¹Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine 2001;111(1):38-44

How can I approach the hospice discussion with my loved one(s)?

The final months and days of life are frequently marked by strong emotions and hard decisions. Talking about hospice, even with those closest to you, can be difficult. Here are some tips to get the discussion going.

For patients speaking to families

Education is key. Educate yourself first. By now, you’ve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your family may be misinformed about the realities of hospice. View our video on dispelling hospice myths. Read and share "Considering Hospice: A Discussion Guide for Families" at HospiceCanHelp.com

Determine what your loved ones know. Before bringing up hospice, make sure your loved ones have a clear understanding of your health status. People handle difficult information in different ways. If family members are not accepting or understanding of your prognosis, you might want to have your physician, clergy or a trusted friend speak with them on your behalf.

Discuss your goals for the future, as well as theirs. As a patient, your greatest concern might be to live without pain, or to stay at home, or not to be a burden. Ask your loved ones what their concerns are when they consider the coming months, weeks and days. Explain that hospice is not giving up. It is an active choice to ensure that everyone’s needs are met.

Take initiative. Remember, it’s up to you to express your wishes. Sometimes, out of concern for your feelings, your family or loved ones might be reluctant to raise the issue of hospice care for you.

For families speaking to patients

Education is key. Educate yourself first. By now, you’ve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your loved one may be misinformed about the realities of hospice. View our video on dispelling hospice myths. Read and share "Considering Hospice: A Discussion Guide for Families" at HospiceCanHelp.com

Ask permission. Asking permission to discuss a difficult topic assures your loved one that you will respect their wishes and honor them. Say something like, “I would like to talk about how we can continue to ensure you get the very best care and attention as your condition progresses. Is that okay?”

Determine what is important to your loved one. Ask them to consider the future: “What are you hoping for in the coming months, weeks or days? What are you most concerned about?” The patient might express a desire to be comfortable, to stay at home, or to not become a burden.

Discuss hospice care as a means of fulfilling the patient’s wishes. Now that your loved one has told you what is important to him or her, explain that hospice is a way of making sure wishes and desires are met. For some, the word hospice evokes a false notion of giving up. Explain that hospice is not about surrendering to disease or death. It is about bringing quality of life to the patient’s remaining months, weeks or days.

Assure the patient that they are in control. Hospice gives patients options: the option to remain in the comfort of their own home, the option to take advantage of as much emotional and spiritual support as they desire, the option to have their own doctor actively involved in their care. Reassure your loved one that you will honor their right to make choices about what is most important in life.

Be a good listener. This is a conversation, not a debate. Hear what the other person is saying. Know that it is normal to encounter resistance the first time you talk about hospice care. But if you listen and understand your loved one’s barriers and reasons for resisting, you will be prepared to address and ease their concerns in your next hospice discussion.