Navigating Hospice Care

Hospice care can offer peace of mind to families and the person in need of such care. However, understanding hospice care, how to get approved for it, and who pays for it can be complex.
hospice care

Hospice care can offer peace of mind to families and the person in need of such care. However, understanding hospice care, how to get approved for it, and who pays for it can be complex.

Below is a comprehensive guide to what hospice care is, eligibility requirements, and what to expect when someone receives hospice care.

But first, here is a quick and actionable checklist if you’re looking to get started right away:

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What Is Hospice Care?

Hospice care focuses on improving the quality of life for a person with a severe, life-limiting illness. Hospice can also make life easier for the person’s loved ones and caregivers.

image of a woman being comforted in hospice care

“Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible,” according to the American Cancer Society.

Typically, hospice care is associated with care for a person shortly before they pass away.

Although this is true, it’s possible for a person to enter into hospice care and then leave it as their health improves or they decide to have active treatment again for their disease.

Yet in most circumstances, hospice care focuses on providing comfort for someone without treating the disease that may affect them.

That’s the real key to understanding hospice care. While the idea of “going on hospice” is associated with the idea that someone is going to pass away within the coming months, what hospice really means is that an individual is choosing care focused on comfort and quality of life rather than care focused on treating their illness.

Hospice care often becomes an option when a person has an illness that is thought to be incurable.

Generally speaking, people within hospice care are expected to live for six months or less. The most common illnesses with those in hospice care include:

  • Cancer
  • Heart disease
  • Lung disease
  • Dementia 
  • Stroke

A health care provider may bring up the possibility of hospice care if you have a loved one in need of it. Or, you may need to broach the topic yourself. Talk in advance with family members and your loved one about whether hospice may be the right option. In fact, it’s best to talk about hospice care sooner than you think your loved one needs it. You can even add hospice related preferences to health planning documents, such as a living will.

Hospice Eligibility Process

To receive hospice care, a person must be eligible. It isn’t simply something you choose, but something you apply and are accepted into.

nurse comforting a woman in hospice care by holding her hand

This decision is typically made by a qualified medical provider along with help from certain guidelines, which may include the following criteria:

  • The person has a terminal illness and is expected to live for 6 months or less.
  • The person wants palliative care only. This means they want care that provides comfort but doesn’t treat the illness they have. 
  • The person’s functional status is declining. This is something that a trained medical professional will monitor by looking at specific activities of daily living, changes in nutritional status (such as a 10% or greater loss of body weight), and a greater need for hospitalizations over the past 6 months or a decrease in cognitive activity.

Hospice care is paid for by one of the following:

  • Medicare Part A or Medicaid (Medicare coverage for hospice is common as many people in hospice are over the age of 65)
  • Veterans’ benefits
  • Private insurance
  • A financial program available through the hospice if your loved one is uninsured

Guidelines for hospice eligibility and coverage will differ by provider, so this is something you’ll want to research. If you’re not sure how to begin, the hospice provider that you choose can help you get answers.

Overall, hospice aims to provide care for someone facing the end of life no matter what their ability to pay. This is why hospices typically have programs to help support those in need of care but who may not have insurance or the ability to pay. They have this money available through fundraising programs.

Hospices aim to make the payment process as smooth as possible and the case workers at most hospice programs are extremely knowledgeable and supportive. Always speak up if you are unclear about something and they will help guide you through this process. 

Your greatest resource for understanding hospice care are the staff members themselves. They have dedicated their lives to helping those in these difficult situations and can walk you through the options with ease.

If you need it in the meantime, here is a link with more information about Medicare’s coverage of hospice services. 

How to Choose a Hospice Provider

Choosing a hospice care provider can seem like an intimidating process. Most larger cities will have dozens of providers and many of them can seem rather similar.

nursing providing comfort and a glass of water to a woman in hospice care

Fortunately, there are a few parameters you can keep in mind to make the search easier. Use the following to help guide you through the process:

  • Read online reviews and look for overall positive comments/ratings.
  • Speak with friends, family, and other caregivers to find out which hospices they have used.
  • Find out if the hospice is a member of your state’s hospice association. Although this isn’t a guarantee that they are the right match for your loved one, it does show a level of professionalism.
  • Find out if the hospice is accredited by the Community Health Accreditation Program or the Joint Commission. Accreditation from these third-party organizations can help show that a hospice has met certain standards. However, note that hospices are not required to have accreditation from either organization.
  • Make sure the hospice works with your method of payment, be it through veterans’ services, Medicare, or private insurance. If you don’t have insurance, you’ll want to verify that the hospice has a program to provide financial support for its services.
  • Find out what types of care the hospice is able to provide, to verify that it meets the type of care your loved one may need. This may include at-home hospice care, continuous care (24/7 when medically needed), inpatient hospice care (which takes place at the hospice facility), and respite care for caregivers.
  • Assess your experience with staff members during your interactions. Are they friendly and helpful? 
  • Ask the hospice in advance if they can work with any special needs that your loved one may have. This may include comfort care for a specific disease (for instance, Alzheimer’s). Or, it could mean working with and honoring a different culture, religious, or belief system.
  • Reflect on the way that staff members answer any questions that you have. It’s normal to have many questions. At the right hospice for your loved one, they should have patience and compassion for your queries.

What Happens During Hospice Care?

One common misconception about hospice care is where it will take place.

You may assume that your loved one will spend their time completely at a hospice facility. While that’s one option, it’s certainly not the only option, or even the most common option.

woman and her nurse doing stretches to help in hospice care

In fact, a person can be under hospice care but actually live or stay in:

  • Their home
  • An assisted living facility
  • A hospital
  • A hospice center

While under hospice care, a person will have a regular caregiver, be it a family member, another loved one, or a caregiver who works directly with the hospice provider. That caregiver and the person receiving hospice care are supported by hospice professionals who can provide emotional, medical, and spiritual support. These professionals may include:

  • Doctors
  • Nurses
  • Social workers
  • Clergy members
  • Experienced volunteers
  • Hospice aides

A representative from the provider will visit someone under hospice care regularly to provide any type of support that is needed. Support from hospice is also available by phone 24/7.

If you have any trouble during hospice care, let one of their representatives know. They can help remedy the situation or find an alternative approach to help you or your loved one who is in hospice care.

Aides are available through hospice to help your loved one with tasks like bathing, dressing, and cooking.

Other services that hospice offers may include:

  • Counseling both for the person in hospice care as well as their family members
  • Medication
  • Medical equipment
  • Physical, occupational, and speech therapy
  • Spiritual assistance

Hospice professionals will use a range of services to keep your loved one comfortable. This goes beyond just medication. Art therapy, massage, counseling, and exercise are just some of the other approaches used to help improve comfort and quality of life for someone in hospice care.

As mentioned earlier, while hospice care focuses on helping someone with a terminal illness, this doesn’t mean that they focus on dying. If anything, hospice care workers want to make sure any remaining time is full of life and love.

Changes In Needs

Sadly, the most common change is when a loved one’s time comes to an end. If your loved one dies while in hospice care, contact the hospice nurse. They can guide you through the next steps and quickly turn to help you and your family in this time of need.

Hospice care can continue to offer support to family members after a loved one passes. This includes grief support groups and similar services. Ask the hospice you are using for more details if this is something that may be important for you.

grandfather in hospice care being comforted by grandson

On a brighter note, it’s also possible to decide to stop hospice care for positive reasons. For instance, your loved one may have decided to enter hospice as their cancer treatments have become futile. But then, a new experimental treatment becomes available. After discussions with their doctors, they may opt to halt hospice care to try the new treatment. Of course, it’s also possible to decide to re-enter hospice after giving the new treatment a shot.

It isn’t uncommon to go in and out of hospice care several times based on needs.

Some older adults will reach a stage where they choose to enter a hospice program for nearly any medical situation as they feel they are simply too old and frail to undergo major medical treatment. This could mean that a bad spell of the flu or a broken hip could lead them into a hospice scenario—but again, this doesn’t mean they are dying, it just means they prefer palliative care to medical care, and they might get through it just fine.

Some Parting Words

A qualified medical professional can help determine if your loved one qualifies for hospice. Payment for hospice is made through programs like Medicare, veterans’ services, private insurance, or financial support programs available through the hospice.

The decision to enter hospice care isn’t usually easy. However, many people feel comforted by what hospice care can provide. Speak with your loved one as well as trusted family members and friends about the option of hospice care. Weigh the pros and cons for your loved one’s situation.

Have another question? Ask an expert.

Our team is here for you. If you have a question about caring for an older adult or other member of your family—be it physical, legal, medical, financial, or anything in between—we’ll have one of our Trusted Advisors get back to you ASAP.

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