Hospice Care for Kidney Disease Patients

If you are reading this, it is likely that you or someone you love has been waging a difficult physical and emotional battle against kidney disease. Your search for comfort, support and answers does not stop when you choose to forgo dialysis. Reducing or discontinuing medical support affects the whole family. That’s when VITAS can help.

• When is the right time to ask about hospice?
• What can hospice do for a patient with kidney failure?
• What can hospice do for the family of a patient with kidney failure?
• What are the overall benefits of hospice care?
• How can I approach the hospice discussion with my loved one(s)?
• When is the right time to ask about hospice?

Even when a patient has excellent medical care and a family’s loving support, sometimes the burden of dialysis outweighs the benefits. When patients decide to discontinue dialysis, they still have immediate medical needs and personal wishes. Families also have concerns. Hospice care addresses the physical, emotional and spiritual needs that can be significant at the end stage of kidney failure.

In general, hospice patients are estimated by their physicians to have six months or less to live. When patients living with kidney failure choose to forgo dialysis, their longevity depends on the amount of kidney function they have, the severity of their symptoms and their overall medical condition. Only a doctor can make a clinical determination of life expectancy.

Request a hospice evaluation

The patient's nephrologist (kidney specialist) or personal physician may recommend hospice for kidney disease when the time is right. Patients and family members can also 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 800.582.9533 to see how hospice can help, or contact us online.

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

What can hospice do for a patient with kidney failure?

The hospice team evaluates a 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 for kidney failure is to manage symptoms and relieve physical and emotional distress so patients can retain their dignity and remain comfortable.

Hospice for renal disease offers comprehensive services for patients:

• Pain and symptom control – VITAS specialists in pain and symptom management help manage pain, stiffness, fatigue, loss of appetite, nausea, itching, difficulty breathing, difficulty sleeping, anxiety, depression and other symptoms common to kidney failure. This ensures patients are able to enjoy life and remain in control of day-to-day decisions for as long as possible.
• Care for patients wherever they live – The hospice team brings services to patients 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 nephrologist or other physician. A team manager ensures that information flows between 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 to help patients maintain their emotional and spiritual well-being.

What can hospice do for the family of a patient with kidney failure?

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 or dialysis, families experience strong emotions and feel overwhelmed.

Hospice helps families of patients with kidney failure by providing:

• 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 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 end-stage kidney failure can cause tremendous stress. A caregiver can take a break of up to 5 days while the patient is cared for in a Medicare-certified inpatient setting or facility. Read more 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 more about our grief and 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 gives patients and families the support and resources to see them through this challenging chapter of life and help patients 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 (26% 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. VITAS gives families the training, resources and support they need to give their ailing loved ones the care they deserve.

¹Gozalo PL, Miller SC, Intrator O, Barber JP, Mor V. Hospice effect on government expenditures among nursing home residents. Health Serv Res. 2008;43(1):134–153.

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. To begin the conversation about hospice with your family, we offer this helpful resource for you to download, 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 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, 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.

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

For families speaking to patients

Educate yourself first. Being well-informed is the key to having an effective discussion with your loved one about a topic as sensitive as hospice. We encourage you to read and share "Considering Hospice: A Discussion Guide for Families" at HospiceCanHelp.com

Ask permission. Asking permission to discuss a difficult topic assures a family member with kidney disease 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. Make sure your loved one knows you want to put his/her needs first. Ask what he/she is hoping for in the future — a desire to be comfortable, to stay at home, to be pain-free?

Discuss hospice care as a means of fulfilling the patient’s wishes. Once your loved one has told you what is important, explain that hospice is a way of making sure that his or her 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. Learn why choosing hospice isn't 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, and 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. Read more about the control hospice gives the patient and family.

Be a good listener. 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 their concerns in your next hospice discussion.

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.