Caregivers for loved ones in hospice or palliative care have tremendous responsibilities. In addition to caring for a loved one, they also become medical advocates working with the care team, family coordinators, and emotional supporters. Perhaps the most complicated role for caregivers, however, is being a financial and legal advocate for their loved ones.

If caregivers don’t have a background in finance or law, it can be an overwhelming piece of the caregiver puzzle. How can hospice care be paid for? Who can help with drafting legal documents such as wills or power of attorney? What should a caregiver do to protect their employment while also caring for a loved one in hospice care?

It can be a lot. Thankfully, resources are available for caregivers, families, and patients to help with everything. We break down where to look for financial assistance for hospice care, financial assistance eligibility, how to draft legal documents, and more, and we’ll provide resources to a wealth of information so everyone feels confident and secure as a loved one enters end-of-life. Additionally, Heart to Heart also has many resources that can be useful during an already stressful time.

Who Pays for Hospice Care?

Figuring out how to pay for hospice care can be a daunting question for many caregivers as their loved ones begin hospice. Thankfully, many resources provide financial assistance for patients and caregivers. In fact, hospice generally ends up being less expensive than staying in hospitals for many patients with terminal diagnoses. 

Studies have found that hospice care “can significantly lower the cost of end-of-life medical expenses, particularly if a patient spends more than 15 days in hospice.” In a 2022 study, researchers found that care for terminal patients with non-sudden illnesses who spent 15 or more days in hospice cost 3.1% less than care for similar patients who didn’t enroll in hospice. That is not an insignificant amount when it comes to medical care.

But how can you pay for hospice care? Here are some options.

Medicare and Medicaid

Medicare and Medicaid are both wonderful financial resources for hospice care. The Medicare Hospice Benefit provides access to services that address needs that accompany a terminal illness. Once it is determined that a patient is eligible for Medicare Part A, and their physicians certify that life expectancy is six months or less, the patient qualifies for the Medicare Hospice Benefit. 

The Medicare Hospice Benefit covers all care related to the palliation of the terminal patient. Care that is unrelated to the terminal illness continues to be covered by Medicare Parts A and B, with all normal rules applicable.

Medicare patients must enroll in the specific hospice benefit in order to get it. It provides care for two 90-day periods in hospice, followed by an unlimited number of 60-day periods. At the start of each period of care, a doctor must recertify that the patient has six months or less to live. The links above also provide in-depth lists of what is covered by Medicare for hospice patients.

For Medicaid, children with disabilities or adults who meet Medicaid’s financial eligibility criteria are fully covered for end-of-life care. Beneficiaries who are dual-eligible for both programs (approx. 20% of Medicare beneficiaries) “can have Medicaid cover costs that Medicare doesn’t cover, such as outpatient prescription drugs and long-term care.” Medicaid also pays at least 95% of room and board costs for hospice patients in a nursing home.

These programs offer remarkable coverage and can offer tremendous relief to families and caregivers. If your loved one is eligible for either program, it is helpful to enroll them to take advantage of the coverage.

Veterans Affairs

The U.S. Department of Veterans Affairs (VA) has programs designed around patient and caregiver support for patients in hospice care who are United States veterans. One program is called TRICARE.  TRICARE covers hospice care in the United States, the District of Columbia, and U.S. Territories. TRICARE covers supportive hospice services (including pain control and counseling services), home health aide services, and personal comfort items. It also covers injuries or unrelated conditions. TRICARE cover all four levels of Hospice Care; routine home care, continuous home care, general inpatient care and inpatient respite care.

The VA also provides support for spouses, dependents, or survivors of veterans who meet certain service-connected stability requirements called the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA). CHAMPVA covers up to 100% of costs for hospice and (including the covers the four levels of care).

There is also direct support for caregivers through the VA called The Program of Comprehensive Assistance for Family Caregivers. This program provides support for a primary caregiver and two secondary caregivers. Support includes:

  • Caregiver support and education
  • Mental health counseling
  • Certain travel benefits
  • Monthly stipends for caregivers
  • Access to healthcare benefits through CHAMPVA if not already qualified under another plan
  • Free legal and financial advice
  • Access to military commissaries, exchanges, and recreation retail facilities

The department also provides caregiver and home support through VA Aid and Attendance or Housebound benefits. Visit their website to find out if you or your loved one qualifies to receive support at home.

Private Insurance and Other Benefits

If you aren’t a Medicaid or Medicare patient or a veteran, you can receive hospice and caregiver support through private insurance or other programs. These programs include:

What are a Caregiver’s Legal Responsibilities?

Another important aspect of a caregiver’s responsibilities is the legal side of things. As a patient is nearing end-of-life, it’s important to make sure all of their affairs are in order and the caregiver has official say in medical, legal, and financial matters. This is where legal knowledge and resources can come in handy for caregivers and families.

Below are some key legal areas to understand for patients nearing end-of-life, and resources to assist caregivers and families to make sure the patient’s wishes are followed.

Power of Attorney

A healthcare power of attorney (POA) is a very important legal document that “allows a caregiver to make decisions on behalf of a loved one or person for whom they provide care if they become unable to communicate their wishes.” Creating and executing a POA document is an especially important step for caregivers and patients to ensure a loved one’s wishes are followed. This can encompass do not resuscitate (DNR) orders, what types of medications are administered, and even what spiritual care is or isn’t provided. Caregivers can work closely with healthcare providers to better understand decisions and how they can reflect the patient’s wishes.

This is important not only for medical decisions but for financial decisions. Financial power of attorney grants caregivers the ability to manage the patient’s finances leading up to and after end-of-life. Making sure the patient’s wishes are meticulously followed and legally documented can help avoid potential issues with family members and loved ones.

Caregivers should make sure to seek legal help to avoid ambiguities that could lead to disputes. It could also be helpful to have the healthcare power of attorney and the financial power of attorney be separate people. This way, one person doesn’t have to shoulder the burden of both and can split up the decision-making process for less stress later.

Advance Directives

Advance directives go hand-in-hand with healthcare power of attorney in that they deal with a patient’s wishes for medical care. Advance directives documents state the wishes of patients regarding medical care should they be unable to communicate. There should be clear, concise instructions so the patient’s preferences are met. Discussions regarding advance directives should happen as early as possible while the patient is still lucid and able to communicate, if possible. Tools such as Physician Orders for Life-Sustaining Treatment (POLST) forms can provide clear guidance to the care team.

Estate Planning

A key responsibility of the financial power of attorney is helping the patient with a will or trust, which will ensure that a patient’s assets are distributed according to their wishes after they have passed. Creating a clear plan in advance prevents misunderstandings and conflicts and will allow the patient peace of mind while in hospice. We strongly advise consulting an objective third party, such as a lawyer and/or financial advisor, to make sure documents follow the patient’s preferences clearly and completely. Wills and trusts are highly important documents, and should be taken as seriously as possible.

It’s also important to speak with the patient about their preferences for funeral or memorial plans. This can be a point of contention for families after a loved one has passed, so making sure the patient’s wishes are written down can alleviate conflict and reduce some of the emotional burden.

How Heart to Heart Can Help

At Heart to Heart, we know that the legal and financial burdens of end-of-life can be daunting. That’s why we provide resources to caregivers, families, and patients to assist so everyone can focus on the quality of life of the patient. 

Our team is always on hand to answer your questions and provide outside resources to help if needed. Our Patient & Family handbook also has information, resources, and tips for patients and families.

Heart to Heart knows how important the final days are, and we want to make sure they are as smooth as possible. No one wants to have to worry about finances, wills, and other legal issues while a loved one is in their final days, and no one should bear that burden alone. We’re here–and want–to help you navigate these decisions so you can spend more of your time and energy making treasured memories with your loved one.