Hospice Care for ALS (Lou Gehrig’s Disease)
If you are reading this, you or someone you love has probably been waging a difficult physical and emotional battle against ALS. Your search for comfort, support and answers becomes more difficult when you face decisions about feeding tubes or breathing machines (ventilators). Deciding to discontinue medical support for a patient coping with end-stage ALS affects the whole family. That’s when hospice care can help.
When is the right time to ask about hospice for a patient with ALS?
Considering the slow decline of a patient with ALS over months or years, it can be difficult to determine when the time is right for hospice. In general, patients with a prognosis of six months or less are defined as “hospice eligible.” When patients with ALS decide to discontinue the use of a feeding tube or breathing machine, they are likely to benefit from hospice services.
Only a doctor can make a clinical determination of the life expectancy of a patient with ALS (also known as Lou Gehrig's disease). However, loved ones who see the following symptoms can be fairly sure that the ALS has progressed to a point where all involved would likely benefit from hospice services:
- The patient has become wheelchair or bed-bound
- Speech has become barely intelligible, unintelligible or impossible
- The patient requires major assistance with eating, dressing and grooming, or is totally dependent on others for these activities
- The patient does not wish to be dependent on feeding tubes for nutrition and hydration
- The patient does not want to be placed on a ventilator for breathing, or wishes to discontinue mechanical ventilation
The patient’s neurologist or personal physician may recommend hospice when the time is right. But patients and family members can be their own advocates as well. You, your loved one or your physician may request an evaluation to see if hospice is an appropriate option for care. Call 866.418.4827 or contact us online to see how hospice can help.
Read more: What is Hospice?
What can hospice do for a patient with ALS?
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 ALS:
- Pain control – People with ALS often suffer pain from muscle 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, dementia, anxiety and depression.
- Care for patients wherever they live – Patients can receive hospice care 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, the nurse, social worker 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—from trained volunteers to special services to grief and bereavement professionals—to help patients maintain their emotional and spiritual well-being.
Read more: Frequently Asked Questions (FAQs) About Hospice
What can hospice do for the family of a patient with ALS?
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 can experience strong emotions and feel overwhelmed.
Hospice offers comprehensive services for families of patients with ALS:
- 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. Knowledge is power; 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, and continues to be there for the family long after the death.
- Financial assistance – Although hospice services are covered by Medicare, Medicaid/Medi-Cal and private insurers, families may have financial concerns as a result of 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 an end-stage illness can cause tremendous stress. Hospice can provide up to five days of inpatient care for the patient when the caregiver needs a break or to be away.
- Bereavement services – The hospice team works with surviving loved ones for more than a year after a death to help them express and cope with their grief.
What are the overall benefits of hospice care?
If you or a loved one is facing a life-limiting illness, you may have heard the term hospice. Friends or family might have told you about the specialized medical care for patients or the support services for loved ones. But most people are unaware of the many other benefits hospice offers.
Comfort. Hospice works with patients and families to give them the support and resources to assist them through this challenging chapter of life and help them 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 journey, a very personal experience for any individual. 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 seriously ill people make frequent trips to the emergency department; 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 give their ailing loved ones the care they deserve.
Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine
How can I approach the hospice discussion with my loved one(s)?
The final months, weeks 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. Arm yourself with facts rather than emotions in order to help your family navigate the rocky shoals you have already passed. Research websites, including this one. Print out or email to your family "Considering Hospice Care: A Discussion Guide for Families" which you can find at HospiceCanHelp.com. It will give everyone a chance to literally be on the same page.
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 days, weeks and months. Explain that hospice is not giving up. It is an active choice to ensure that everyone’s needs are met.
Take the 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 yourself first. You’ve probably searched the web for information on hospice for ALS and how to talk to loved ones about death and dying. Make notes; share what you find with the members of your family you think will be most receptive to information about hospice services. One excellent guide is "Considering Hospice Care: A Discussion Guide for Families" at HospiceCanHelp.com. Then, together, open the discussion with the patient.
Ask permission. Asking permission to discuss a difficult topic assures your loved one that you will respect his or her 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 him or her 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 witness an upcoming event, remain at home, be free of pain or 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 he/she is in control. Hospice gives patients choices: to remain in the comfort of their own home, to take advantage of as much emotional and spiritual support as they desire, to have their own doctor actively involved in their care. Reassure your loved one that you will honor his or her right to make choices about what is most important in life.
Be a good listener. Keep in mind that 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 his/her concerns in your next hospice discussion.
Read more: Hospice Family Discussion Guide
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