Hospice Care for Liver Disease Patients

If you are reading this, it is likely you or someone you love has been waging a difficult physical and emotional battle against end-stage liver disease (ESLD).

The hospice mission is to serve those in the end stages of liver disease, to relieve pain, control symptoms, improve quality of life and reduce anxiety for patients and their families. Only a doctor can make a clinical determination of end-stage liver disease life expectancy. However, look for these common signs that the disease has progressed to a point where all involved would likely benefit from hospice services.

Signs it might be time for hospice

Considering the slow decline of a patient with liver disease, it can be difficult to determine when the time is right for hospice. In general, hospice patients are believed to have six months or less to live.

Not every patient with ESLD wants or is appropriate for a liver transplant. When symptoms become difficult to control and quality of life deteriorates, patients and their families and physicians should consider hospice.

Don’t put off the decision. Hospice services can make a big difference in quality of life for the patient and the family. If you feel it is time to focus on the patient rather than the disease, it is time for hospice.

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

The patient is a liver transplant patient whose transplant has failed and the patient is not eligible for, or refuses, another transplant

• Sudden or progressive loss of functional independence
• Weight loss or reduced appetite
• Inability to work
• Patient spends the majority of time sitting or lying in bed
• Confusion, cognitive impairment
• Abdominal distention
• Malaise
• Bowel dysfunction
• Breathing difficulties
• Itchy skin
• Restlessness
• Altered mood and behavior

The patient’s gastroenterologist or personal physician might recommend hospice when the time is right. Patients and family members can 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. Call 844.831.0028 to see how hospice can help, or contact us online.

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

What can hospice do for a patient with ESLD?

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

Hospice offers comprehensive services for patients with ESLD:

• Symptom control – VITAS helps manage breathing and bowel difficulties, itchy skin, abdominal discomfort, restlessness, confusion and other symptoms common to patients with ESLD.
• Individualized care plan – As the end of life approaches, patients often lose the ability to express their needs. VITAS will design a plan that addresses pain, hydration, nutrition, skin care, agitation, bleeding and other symptoms commonly associated with the diagnosis.
• Care for patients wherever they live – home, long-term care facility or assisted living community. If symptoms become too difficult to manage, inpatient hospice services provide round-the-clock care, when medically necessary, 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 gastroenterologist or other physician. A team manager ensures that information flows between 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 coping with ESLD?

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 to an ESLD patient, families often experience strong emotions and feel overwhelmed.

• Hospice offers comprehensive services for families of patients with ESLD:
• 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, when medically necessary.
• Emotional and spiritual assistance – Hospice meets the needs of loved ones and 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 community services, if needed.
• Respite care – Caring for a loved one with an end-stage illness can cause tremendous stress. Hospice offers up to five days of inpatient care for the patient in a Medicare-certified facility to give the caregiver a break. Read about respite care.
• 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. Read about our bereavement services.

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 of hospice.

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. Working with a patient or family, the hospice team members become participants in the end-of-life process, 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 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 (2.2% vs. 18.8%)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. VITAS gives families the training, resources and support they need to give their ailing loved ones the care they deserve.

¹Holden, TR, et al. 2015. “Hospice Enrollment, Local Hospice Utilization Patterns, and Rehospitalization in Medicare Patients." J Palliat Med. 2015 Jul;18(7):601-12.

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. It might be helpful for you to learn what hospice is, and review common misconceptions about end-of-life care, as your family might be misinformed about the realities of hospice. Many families also find this tool helpful: Considering Hospice: A Discussion Guide for Families. It's a downloadable PDF that you and your family can use when talking about end-of-life-care.

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 do not accept or understand 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, to stay at home or not 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. Read about goals of care.

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. See why it's important to talk about end-of-life care.

For families speaking to patients

Education is key. Educate yourself first. It might be helpful for you to learn what hospice is, and review common misconceptions about end-of-life care, as your family may be misinformed about the realities of hospice. Many families also find this tool helpful: Considering Hospice: A Discussion Guide for Families. It's a downloadable PDF that you and your family can use when talking about end-of-life-care.

Ask permission. Asking permission to discuss a difficult topic assures your loved one that you will respect and honor his or her wishes. 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 the patient 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. Read about goals of care.

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. See why hospice is not about giving up.

Assure the patient that he/she is 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 his or her right to make choices about what is most important in life. See how hospice puts the patient and family in control.

Be a good listener. Keep in mind that end-of-life care requires 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. Review our hospice discussion guide.

Request a hospice evaluation

The primary physician may recommend hospice when the time is right. But as anyone who has faced a serious illness knows, patients and family members often must act as their own advocates to receive the care they need and deserve.

You, your loved one or your trusted physician may request an evaluation to see if hospice is an appropriate option for care.