Hospice Care for Multiple Myeloma: What to Know

Medically Reviewed by Melinda Ratini, MS, DO on June 29, 2022
5 min read

There are many treatments available for multiple myeloma, as well as clinical trials. Yet sometimes, patients get to a point where their disease no longer responds to any treatment. They may decide they don’t want to continue to get treatments any longer. Instead, they are ready for hospice care so that they can focus on the last few weeks, or months, of life.

Unfortunately, many people with multiple myeloma (MM) still die in the hospital. While research shows numbers have gone down – from about 54% in 2002 to just over 40% in 2017 – frequent infections and a need for blood transfusions mean some people with MM aren’t able to pass peacefully at home.

But there are still many instances where hospice is appropriate for someone who’s at the end stages of multiple myeloma. It can allow them to spend time with family and friends while remaining comfortable during the last part of their life.

Hospice care is a form of compassionate care that focuses on quality of life rather than length of life and treatment, for someone who has an incurable disease. The goal is to allow you to live as fully and comfortably as possible. While the hospice philosophy accepts that you will die, it doesn’t try to slow the process down or speed it up. Rather, the goal is to keep you comfortable, rather than to treat the multiple myeloma itself.

When you enter hospice care, you’ll work with a medical team to manage your symptoms so that you can live with dignity and quality. The focus is also family-centered. Both you and your loved ones will make the decisions.

You don’t have to be bedridden or in your last days of life to start hospice treatment. Hospice care is recommended when the multiple myeloma advances to a point that treatment can no longer control it. In general, hospice is usually considered when:

  • You have less than 6 months to live.
  • You’ve had a significant decline in your physical status, such as increased pain, weight loss, extreme fatigue, and shortness of breath, despite treatment.
  • You no longer want to undergo the physical demands of treatment and instead want to focus on living more comfortably.

It’s important to have these discussions with your medical team and your family sooner rather than later. Studies show that hospice care often isn’t started early enough. Sometimes, either the person who is sick or their family resists the idea because they view it as simply giving up. That’s actually not the case. Once you’ve entered hospice, you can stop at any time and return to active multiple myeloma treatment. If you don’t want to do that, hospice allows you to make the best use of your last days with an advanced illness.

The first step is to talk to your doctor. They will start the referral to hospice care. They will certify that your life expectancy is under 6 months if the multiple myeloma is allowed to run its typical course. Then, hospice eligibility is confirmed by the hospice doctor. You can also contact hospice directly, but you’ll still have to have two doctors certify that you have less than 6 months to live.

Hospice can be done wherever you are. Most of the time, that’s at your home or your assisted living center or nursing home. Some hospices also offer their own long-term residential centers. If you need 24/7 care for a short period of time – for example, a blood transfusion – the hospice may transport you to an inpatient facility, then return you to your home.

It’s a good idea to do research on local hospices before you enroll in one. Some ways to do this include:

  • Hospice Compare. This is a government website that has a database of Medicare-certified providers that also provides a quality score based on family caregiver experience and quality of patient care.
  • Ask your medical team for a referral.
  • Talk to friends, family, and neighbors about their experiences with hospice services.
  • Make sure that the hospice is accredited by the Joint Commission or by the Community Health Accreditation Program. This means a third party has determined the hospice meets an established standard of care.

Once you’ve narrowed down a couple of places, you can also ask hospice to send a representative to meet with you or your loved one for an interview.

If you or your loved one is over the age of 65, you’ll be covered through Medicare as long as you use a Medicare-certified provider, which covers all aspects of hospice care. You won’t have to pay a deductible, although you may have to pay a copay for prescription medications and respite care.

If you are under the age of 65 and have private health insurance, your plan may also offer a hospice benefit. You’ll need to check with them because they may not have as extensive coverage as Medicare.

Hospice care is given in benefit periods: two 90-day periods, followed by an unlimited amount of 60-day periods. You won’t lose coverage if you live longer than 6 months. Your benefits will be renewed for as long as you stay alive.

If you don’t have health insurance and have no way to pay for it, speak to hospice directly. Some will provide charity care.

You won’t receive any more medications to treat your multiple myeloma. You usually won’t receive dialysis for kidney disease or blood transfusions for anemia, both of which are common if you have multiple myeloma. Instead, you’ll receive medications for general pain relief. Other services include:

  • Medical equipment like a hospital bed, wheelchairs, or walkers, as well as medical supplies like oxygen.
  • Short-term inpatient care for pain or other symptoms that can’t be done in the hospice setting.
  • Short-term respite care for family caregivers. Usually, the patient goes into a hospice facility or nursing home for a few days so loved ones can get a break.
  • Grief and loss counseling for you and your loved ones. These are also provided to families for about a year after the patient’s death.