The many tasks of caregiving can be so overwhelming that you just start doing things, maybe before you have really taken in what actually needs to be done. It is important to take the time to listen—to the person you are caring for, to the other people caring for them, and to yourself.

Listening to the Patient
You may be caring for someone who needs assistance with day-to-day chores and tasks but can still make their own decisions about personal matters such as medical care, financial and household issues. Take some time to listen and explore what kind of help they want. Often what we think someone wants or ought to want is not what they want at all. Sometimes people resist asking for help, even when it is clear they would benefit from assistance. If that is the case, start small and know that over time things will change as they learn to talk with their inner circle and realize what they want help with.

Knowing and understanding what someone wants will be important if you become responsible for making decisions for them. Read up on advance directives which will help you talk about medical decisions and fill out the documents. Not every situation can be anticipated so it is helpful to understand in general what is important to the patient—what they see as quality of life.

Listening to the doctors and other healthcare workers
You can offer to go to appointments with the patient and assist by taking notes and keeping track of papers, reports and prescriptions as you and the patient talk to the doctor. Take along the list of questions you generated together. Check with the patient during the appointment to be sure they are getting the information they want and need. Repeat back to the doctor any instructions to be sure they have been understood correctly.

Listen to yourself and reach out for information and support
Caregiving can be quite rewarding, and it can be quite challenging. Try not to have rigid expectations of how it will go or how you will feel. Showing up is good; perfection is the enemy. There are resources available to caregivers through government sponsored websites like MyHealthfinder as well as private organizations such as AARP and Caregiver Action Network.

Seek support groups of people caring for like patients; there are many online and in person. The National Institute of Aging, the CDC, the National Alliance on Caregiving, and AARP all are rich resources for help and connections. The American Cancer Society, the American Heart Association, and the Alzheimer’s Association as well as many other disease specific associations all have good information for caregivers.

The NHPCO explains the differences between POLSTs and Advance Directives

A POLST is a part of the advance care planning process and communicates your wishes as medical orders. A POLST form consists of a set of medical orders that applies to a limited population of patients, such as seriously ill or frail persons, and addresses a limited number of critical medical decisions. A POLST has the option of specifying Do Not Resuscitate (DNR) but also makes provision for other types of treatment such as feeding tubes and mechanical ventilation. They will be filled out in consultation with your doctor.

What is a POLST?

A POLST communicates your wishes as medical orders, and so is prepared together with your doctor who will sign it. POLST’s have different names in different states, but all have the force of medical orders. POLST’s are specifically for the seriously ill or frail. POLST’s can travel with you and are honored by emergency medical technicians.

How is a POLST different from an advance directive or DNR (do not resuscitate)?

• POLST = Portable Medical Orders.  Different states use different names such as POLST, POST, MOLST, MOST, etc. for their programs.
• POLST is for people who are seriously ill or have advanced frailty. If you are healthy, an advance directive is for you. POLST forms and advance directives are both parts of advance care planning but they are not the same.
• POLST forms must be filled out and signed by a health care provider. When you need a prescription, you go to your provider who writes or types an order for your prescription and signs it. POLST is a medical order so it is the same: you need to go to your health care provider who will write out the POLST and sign it. The difference with POLST is that you should have a good talk with your provider about what you want considering your current medical condition: What is likely to happen in the future? Treatment options? You’ll also be asked to sign your POLST form.
• POLST forms tell other providers what you want. During a medical emergency, if you can talk, providers will ask you what you want. POLST forms are used only when you cannot communicate and you need medical care. When that is the situation, the POLST form orders providers to give you the treatments you chose.
• POLST forms are out-of-hospital medical orders. This means that they are medical orders that travel with you. Wherever you are, your POLST form tells health care providers what treatments you want and your goals of care, even if you transfer from hospital to nursing home, back to your home, or to hospice or another setting.
• POLST is voluntary. You make the choice about having a POLST form: you should never be forced to have one! If you are healthy, however, your provider may choose not sign a POLST form for you since it was designed for people who are seriously ill or have advanced frailty (some state laws do not allow providers to sign a POLST form unless you are seriously ill or have advanced frailty).
• Advance Directives:  POLST’s give specific directions about treatments during an emergency if you cannot speak for yourself. However, POLSTs do not appoint someone to speak on your behalf which Advance Directives generally do. In a POLST, you specify exactly what you want and don’t want and for how long. They have the force of medical orders and must be honored by emergency medical technicians (EMT’s). EMT’s cannot honor advance directives or medical powers of attorney. Once emergency personnel have been called, they must do what is necessary to stabilize a person for transfer to a hospital, both from accident sites and from a home or other facility. After a physician fully evaluates the person’s condition and determines the underlying conditions, advance directives can be implemented.
• Do Not Resuscitate (DNR’s):  A do-not-resuscitate order, or DNR order, is a medical order written by a doctor. It instructs healthcare providers not to do cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. If presented, it will be honored by EMT’s. A POLST has the option of specifying DNR but also makes provision for your choices around resuscitation and other types of treatment such as feeding tubes and mechanical ventilation.

How do you find the POLST for your state?

You may want to review your state’s form before you meet with your doctor. The National POLST website has lots of information on POLSTs in general and you will be able to find and review the one from your state. 

The NHPCO answers some FAQs about how Hospice Care is paid for:

How is Hospice Care Paid For?

Hospice is most often paid for as a defined benefit of Medicare. However, hospice may also be paid for as part of a Medicare Advantage plan, by state Medicaid plans, or, in the case of children and others covered by private insurance, by private insurance. There may be different services covered by different sources of payment, so be sure to discuss the source of payment and the services that are covered with your hospice team.

Medicare and Medicaid

Medicare covers hospice care costs through the Medicare Hospice Benefit, which you can read about at Medicare.gov. If you’re in a Medicare Advantage Plan or other Medicare health plan, once your hospice benefit starts, Original Medicare will cover everything you need related to your terminal illness. Original Medicare will cover these services even if you choose to remain in a Medicare Advantage Plan or other Medicare health plan.

Veterans’ Administration (VA) benefits also cover hospice care.

The coverage of hospice care by Medicaid is optional and varies by state so be sure to read up at Medicaid.gov.

Private insurance

Many work-based and private insurance plans provide at least some coverage for hospice care. It’s best to check with your insurance company because there are different types of plans available that may or may not cover hospice services. There are also different ways a person can be considered eligible for hospice care and what costs are covered can vary based on the health plan you have.

Uninsured

For people who are not insured, or who may not have full coverage for hospice services, some hospice organizations may offer care at no cost or at a reduced rate based on your ability to pay. They can often do this because of donations, grants, or other sources. Nearly all hospices have financial support staff who can help you with this, answer your questions, and help you get the care you need.

News from the National Hospice and Palliative Care Organization:

Research Shows Hospice Produces Better Outcomes, Lower Medicare Costs

(Washington, D.C. and Alexandria, VA) – On Thursday, July 27, 2023, a panel of healthcare experts presented groundbreaking new research at a Capitol Hill briefing for Congressional offices, showing that patient use of hospice contributed to $3.5 billion in Medicare savings in 2019, while also providing multiple benefits to patients, families, and caregivers.

The study, conducted by NORC at the University of Chicago, is one of the most comprehensive analyses of enrollment and administrative claims data for Medicare patients covered by Medicare Advantage and Traditional Medicare. The study was funded by the National Association for Home Care & Hospice (NAHC) and the National Hospice and Palliative Care Organization (NHPCO).

Panelists Dianne Munevar, VP of Health Care Strategy at NORC; Dr. Joseph Shega, Chief Medical Office at Vitas; and Susan Lloyd, CEO of Delaware Hospice, related their vast experience with hospice care, extolling its benefit for patients and their loved ones, and also shared findings which prove that longer hospice stays equate to greater savings for taxpayers and overall, better experiences for patients.

Susan Lloyd, CEO of Delaware Hospice shared her personal experience with her mother’s end of life care. “The full benefits of hospice care are realized when the patient and family have the opportunity to engage with the team who provides the support needed wherever [the patient] calls home. Hospice is not a place, it’s a way of caring for people and their loved ones as they are nearing the end of life,” said Lloyd. “One of the greatest blessings of my life was to be there when my mom died. She was not alone; she was surrounded by love. Hospice made that happen for mom, for me, and my family.”

“There’s a lot of myths and misperceptions about what hospice is and what hospice does because of short stays,” said Dr. Joseph Shega, Chief Medical Officer of VITAS. “So when you have a short stay, the hospice does incredible work to try to meet [patients] where they are to honor their wishes […] but if somebody would have that conversation four, five, six, months earlier, they could have an experience like what Jimmy Carter is experiencing now, where he’s chosen he wants to be at home and there’s no difference in life expectancy between those who enroll in hospice earlier vs. those who don’t. With hospice, you can provide that care at home.”

Key findings from the Value of Hospice study include the following:

• NORC estimates that Medicare spending for those who received hospice care was $3.5 billion less than it would have been had they not received hospice care.
• In the last year of life, the total costs of care to Medicare for beneficiaries who used hospice was 3.1 percent lower than for beneficiaries who did not use hospice.
• Hospice is associated with lower Medicare end-of-life expenditures when hospice lengths of stay are 11 days or longer. In other words, earlier enrollment in hospice reduces Medicare spending even further.
• Hospice stays of six months or more result savings for Medicare. For those who spent at least six months in hospice in the last year of their lives, spending was on average 11 percent lower than the adjusted spending of beneficiaries who did not use hospice.
• At any length of stay, hospice care benefits patients, family members, and caregivers, including increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress.