Understanding What Hospice Care Means

July 1, 2024

When treatment for serious illnesses is causing more side effects than benefits, or when health problems become compounded, then a patient and their family members may begin to wonder about hospice. “We recognized as people consider hospice, it’s highly emotional times,” says medical director for Austin Palliative Care Dr. Kate Tindall. “It might include worries and fears.” But one of the things she hears most often from patients and their families is that they wish they had started sooner. Understanding who qualifies for hospice and what it entails is the first part of deciding what might be best for those with terminal conditions.

What is Hospice Care?

Hospice is meant to care for people who have an anticipated life expectancy of 6 months or less, when there is no cure for their ailment, and the focus of their care shifts to the management of their symptoms and their quality of life. With hospice, the patient’s comfort and dignity become the priority, so treatment of the condition ends and treatment of the symptoms, such as pain management, begins. There are no age restrictions placed around hospice care, meaning any child, adolescent, or adult who has been diagnosed with a terminal illness qualifies for hospice care.

An individual does not need to be bedridden or already in their final days of life in order to receive hospice care. Other common misconceptions about hospice care are that it is designed to cure any illness or prolong life. It is also not meant to hasten death or replace any existing care, such as those already provided by a physician.

Determining When it’s Time for Hospice

Establishing care is most beneficial for the patient and their caregivers when it is taken advantage of earlier rather than later. Hospice can be used for months as long as eligibility has been met. Once there is a significant decline in physical or cognitive function, the goal for treatment should become to help that individual live comfortably and forgo anymore physically debilitating treatments that have been unsuccessful in curing or halting the illness. 

Both individuals and their loved ones who would benefit from initiating hospice care are often unaware of the services or are uncomfortable asking about them. “It’s a hard conversation to have,” says professor of medicine and palliative care at the Duke University School of Medicine David Casarett. “Many people really want to continue aggressive treatment up until the very end.” While many wait for their providers to suggest it, it should be understood that if eligibility for hospice has been met, an individual and their caregivers can initiate hospice care on their own.

Establishing Hospice Care

In order to qualify for hospice care, a physician must certify that the patient is medically eligible, which means that the individual’s life expectancy is 6 months or less. Typically, the referral to hospice starts with the attending physician’s knowledge of that person’s medical history, while eligibility is then confirmed by the hospice physician. A hospice care team consists of professionals who are trained to treat physical, psychological, and the spiritual needs of the individual, while also providing support to family members and caregivers. Care is person-centered, with the importance being placed on the coordination of care, setting clear treatment goals, and communicating with all involved parties.

Receiving Care at Home

Hospice care is generally provided in the person’s home, whether it’s a personal residence or a care facility, such as a nursing home. “When people are close to the end of their lives, going to the hospital does not make them feel better anymore,” explains professor of medicine at the University of California Dr. Carly Zapata. “Because there’s not necessarily something that we can do to address their underlying illness.” Staying at home allows the individual to be around their personal things and close to their loved ones and pets, which can provide them with comfort during the end of their life.

What Does Hospice Care Include?

Hospice includes periodic visits to the patient and their family or caregivers but is available 24-7 if needed. Medication for symptom relief is administered, any medical equipment needed is provided, and toileting and other supplies such as diapers, wipes, wheelchairs, hospital beds are provided. What may surprise some people is that hospice patients may even receive physical and occupational therapy, speech-language pathology services, and dietary counseling.

If needed, short-term inpatient care may be established for those who cannot achieve adequate pain and symptom relief in their home setting. Short-term respite care may also become available to help family caregivers who are experiencing or are at risk for caregiver burnout. Bereavement care, or grief and loss counseling, is also offered to loved ones who may experience anticipatory grief. Grief counseling is available to family members for up to 13 months after the person’s death.

Paying for Hospice

The first step in finding a hospice agency is to search for ones that serve your county. If there are several options available, then it’s recommended to talk to more than one and see which agency will best fit the patient’s needs. Adequate research should be conducted since not all hospice agencies provide physical and occupational therapy. 

Hospice is a medicare benefit that all Medicare enrollees qualify for, but it may also be covered through private insurance and by Medicaid in almost every state. Military families may receive hospice through Tricare, while veterans with the Veterans Health Administration Standard Medical Benefits Package are also eligible for hospice. Hospice agencies will also accept individual self-pay, while there are also non-profit organizations that provide hospice services free of charge.

Discontinuing Hospice Care

Though it is uncommon, if a patient does improve or their condition stabilizes, they may no longer meet medical eligibility for hospice. If this happens, the patient is discharged from the program. Another situation that sometimes arises is when a person elects to try a curative therapy, such as a clinical study for a new medication or procedure. In order to do that, the patient must withdraw from hospice through what is called revocation. Both children and veterans are exempt from being disqualified from hospice care if they choose to also pursue curative treatments. Any person may always re-enroll in hospice care at any time as long as they meet the medical eligibility.

Opting for Palliative Care

Individuals with chronic conditions or life-threatening illnesses may opt for palliative care, which doesn’t require people to stop their treatments. Palliative care is a combination of treatment and comfort care and can be an important bridge to hospice care if patients become eligible. Because transitioning to hospice care can be an emotional choice, palliative care providers often help patients prepare for that. Many people avoid palliative care because they think it is equal to giving up and that death is imminent, but studies show that for many, palliative care allows them to live longer, happier lives. This is due to the benefits of symptom management and spiritual support.

Insureyouknow.org

While hospice care can be difficult to accept, it can provide people with the best quality of life possible in their final days, as well as provide their loved ones with valued support. With Insureyouknow.org, you may keep track of all medical and financial records in one easy-to-review place so that you may focus on caring for your loved one, your family, and yourself during this period of their care.

Legal and Financial Planning for Those with Alzheimer’s and Their Caregivers

November 1, 2023

If you or a loved one is diagnosed with Alzheimer’s or dementia, then there are certain things that you will need to plan for legally and financially. An estimated 6 million Americans have Alzheimer’s, and it is currently the seventh leading cause of death in the United States. Alzheimer’s is a brain disorder that slowly decreases memory and thinking skills, while dementia involves a loss of cognitive functioning; both cause more and more difficulty for an individual to perform the most simple tasks. Though a diagnosis can be scary, the right planning can help individuals and their families feel more at ease.

Putting Legal Documentation in Place

Christopher Berry, Founder and Planner at The Elder Care Firm, recommends three main disability documents that should be in place.

First, there needs to be a financial power of attorney, a document that designates someone to make all financial decisions once an individual is unable to do so for themselves. If an individual lacks a trusted loved one to make financial decisions, then designating a financial attorney or bank is an option.

The next document that needs to be in place is the medical power of attorney that designates someone to make medical decisions for an individual. In many cases, it may be appropriate to appoint the same person to be the financial and medical power of attorney, as long as that person is well-trusted by the individual. In the event that something happens to the original power of attorney(s), successor (or back-up) agents for power of attorney(s) should also be designated.

The last document is the personal care plan, which instructs the financial and medical power of attorney(s) on how best to care for the individual in need. For instance, those entrusted to the care of an individual will need to make sure they sign medical records release forms at all doctor’s offices; copies of the power of attorney or living will should also be given to healthcare providers.

These three documents provide a foundation to make decisions for the individual diagnosed with Alzheimer’s or dementia when they no longer can themselves. It’s ideal to include the individual in these conversations in the early stages of their diagnosis, so that they may be a part of the decision-making process and appoint people that they will feel most comfortable with during their care.

How to Pay for Long-Term Care

Since Alzheimer’s is a progressive disease, the level of care an individual needs will increase over time. Care costs may include medical treatment, medical equipment, modifications to living areas, and full-time residential care services.

The first thing a family can do is to use their own personal funds for care expenses. It’s important for families to remember that they will also pay in their time, as many children of loved ones with Alzheimer’s or dementia will become the main caregivers. It may be wise to meet with a financial planner or sit down with other family members, such as your spouse and siblings, to determine how long some of you may be able to forgo work in order to provide full time care.

When personal funds get low or forgoing work for a period of time becomes difficult, long-term care insurance can be a lifesaver. The key to relying on long-term care insurance though is that it needs to be set up ahead of the Alzheimer’s or dementia diagnoses, so considering these plans as one ages may be smart.

Veterans can make use of the veterans benefit, or non-service-connected pension, which is sometimes called the aid and attendance benefit. This benefit can help pay for long-term care of both veterans and their spouses.

Finally, an individual aged 65 or older can receive Medicare, while those that qualify for Medicaid can receive assistance for the cost of a nursing home. If someone’s income is too high to receive Medicaid, then the spenddown is one strategy to know; under spenddown, an individual may subtract their non-covered medical expenses and cost sharing (including Medicare premiums and deductibles) from their available income. With the spenddown, a person’s income may be lowered enough for them to qualify for Medicaid.

Minimizing Risk Factors During Care

Research published recently in the journal Alzheimer’s & Dementia found that nearly half of patients with Alzheimer’s and dementia will experience a serious fall in their own home. Author Safiyyah Okoye, who was at John Hopkins University when the study was conducted, recommends minimizing risks such as these by safeguarding homes early on in diagnoses. “Examining the multiple factors, including environmental ones like a person’s home or neighborhood, is necessary to inform fall-risk screening, caregiver education and support, and prevention strategies for this high-risk population of older adults,” she states.

The good news is that since the progression of Alzheimer’s is often slow, families have plenty of time to modify the home for increased safety.

In addition to fall prevention modifications, other safety measures may include installing warning bells on doors to signal when they’re opened, putting down pressure-sensitive mats to alert when someone has moved, and using night lights throughout the home. Coats, wallets, and keys should also be kept out of sight, because at some point, leaving the home alone and driving will no longer be safe. Conversations about these safety measures, such as when an individual will have to stop driving, are ones that caregivers should have early on with their loved ones. Including individuals in their future planning while they are still cognitively sound will help both them and their caregivers feel more comfortable with the journey ahead.

Insureyouknow.org

It’s important to remember that even though receiving an Alzheimer’s or dementia diagnosis can be devastating, it is not the end. People with Alzheimer’s can thrive for many years before independent functioning becomes difficult. Both patients and caregivers will feel more calm through planning ahead. Insureyouknow.org can help caregivers stay organized by storing all of their important documents in one place, such as financial records, estate planning documentation, insurance policies, and detailed care plans. Above all, there is hope for those with Alzheimer’s; research is happening every day for potential therapies and future treatments.