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Senior’s Hospice: What’s Left Unsaid

A sad senior man is lying in a bed in the hospital. A family member is in the background.

With more than 1.72 million Medicare beneficiaries electing for hospice services in 2021, according to Statista, hospice care is a conversation more adult children and family members are having with the elderly than ever before. 

That makes it an excellent time to clear up the many misconceptions about what hospice care is and isn’t. What doesn’t hospice tell you when enrolling seniors?

Here’s what hospice doesn’t tell you:

  • What kind of care the elderly needs
  • What medications they should be on
  • When to take medications
  • How much time to spend with the patient
  • How little time they spend with the patient 
  • That it’s not always covered by insurance
  • The cost 

As you can see, it’s an exhaustive list. We’re peeling back the curtain and revealing what you must know about hospice before you select this care option.

What No One Tells You About Hospice

Hospice care is a form of end-of-life care provided by a team of health care professionals and volunteers. It is specifically tailored for people experiencing advanced, life-limiting illnesses. 

According to Cancer.org, “The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death.

The goal of hospice care is to ensure the quality of life for both the patients and their caregivers, aiming to provide peace, comfort, and dignity during the final stages of incurable diseases.

This type of care encompasses medical, psychological, and spiritual support, ensuring that patients live as fully and comfortably as possible.

One of the key aspects of hospice care is that it is often chosen by people with serious illnesses who decide not to pursue or continue treatments aimed at curing or controlling their illness.

This decision may be due to the treatments being unlikely to be effective or because the treatments have become overly burdensome. 

Hospice care thus shifts the focus from curing a serious illness to providing high-quality, compassionate care that includes expert medical care, pain relief and symptom management (comfort care), and spiritual and emotional support, all tailored to the patient’s individual needs and wishes.

Furthermore, hospice care extends its support to the loved ones of the patient during this difficult time, even into the period of bereavement.

It turns out that hospice care at the end of life has a lot of myths, though. People assume you can only enroll the elderly if they have cancer (not true), that ill patients can’t be on hospice until their final days, or that the care lasts only six months. 

Then, there’s the long-standing erroneous belief that hospice care is a death sentence. It can be, but it’s possible for some hospice patients to leave hospice care. 

With hospice so generally shrouded in mystery, it’s no surprise that many other mistruths have perpetuated.

Here are some other things no one tells you about hospice.

What Kind Of Care The Elderly Needs

A hospice provider does not recommend a treatment plan or medical care for the elderly, per se.

If you have goals or a plan for the senior in your life, the hospice staff are more than willing to hear and implement it. However, they won’t push a plan on you.

This can be intimidating to some adult children and family caregivers, especially if you’ve never been put in a position of deciding what the senior’s care looks like to such a broad extent. However, don’t mistake it for the hospice team not caring about what care the elderly receives.

You can always consult with the senior’s doctor to recommend a care plan if you feel like you can’t do it yourself. 

What Medications They Should Be On

Likewise, the hospice staff won’t tell you which medications the senior should be on, including if they should take new medications or continue their current med regimen. 

When my mother went through hospice after a terminal diagnosis, we were told that since she was under hospice, she’d have to go off it to receive any curative treatments if they became available. That included new medications.

This is something else you should consult with your senior’s regular healthcare providers about if you suspect that any medication changes or new prescriptions are required.

When To Take Medications

Hospice care does not remind a senior when to take medications.

Since the care here is not curative, the staff will not administer prescription or nonprescription treatments. That includes everything from basic medication like blood pressure drugs to chemotherapy medications.

The person must be able to set up their medication schedule or a caregiver must do so, because hospice won’t.

How Much Time To Spend With A Patient

Hospice is comprised of multiple parties, from home health aides to social workers, nurses, doctors, and other medical staff. Since so many professionals are involved, the amount of time any of them might spend with a senior in hospice care varies.

As the adult child or caretaker, if your loved one is in a hospital setting, you should check in with them regularly to ensure they feel they’re getting the required level of care and attention.

Hospice staff cannot always meet the care requirements a patient needs, so it doesn’t hurt to have a backup plan during these already-stressful times.

How Little Time The Hospice Team Members Spend With The Patient

If your loved one is under hospice care at home, as my mother was, hospice is not there 24/7. This surprised me. Because patients in a hospital setting potentially can have health care providers stop in to see them around the clock, I thought the same thing would happen if the patient was under care at home.

Not so, under some plans.

My mom’s hospice nurse only came to the house twice a month at the beginning. Of course, we could call her with questions any time, but that’s not the same as having daily care.

When Mom’s condition worsened, the hospice nurse checked in weekly.

When Mom was actively dying, hospice still only came out twice during her final week.

At the very end, we were alone with her when she passed. We had been given instructions for how to administer medications to help her stay comfortable, but we had to do everything on our own.

That’s very scary and distressing for people who are not trained in medical care.

That It’s Not Always Covered By Insurance

While hospice care is often paid for by insurance, usually Medicare hospice benefit or Medicaid, it can vary by state and insurance plan.

If Medicare covers the costs, it’s usually a Medicare Part A or Hospital Insurance or Part C or Medicare Advantage Plan that does it. Even then, insurance coverage isn’t guaranteed, although that varies by state.

For instance, in New Jersey, patients or caregivers must ask a hospice medical director and their primary care physician to attest to the senior’s life expectancy. Further, the senior must agree through a statement that they select hospice over Medicare-covered treatment. 

If they live longer than six months, that’s fine, but they must attest to those statements regardless. 

The Cost 

Hospice is designed as a short-term treatment, but it’s not cheap. Hospice costs for in-home care run anywhere from $165 to $215 a day for the first 60 days. Then, the daily prices drop for as long as the senior requires ongoing care but can still cost upward of $165 a day. 

At that price, the cost of hospice is a minimum of $1,155 a week, $4,950 a month, and $30,030 for six months and that’s just for in-home care.

In-patient hospital care runs $1,111 per day.

What Are The Negatives Of Hospice Care?

While hospice care can be a solid choice for many older adults, it’s just as detrimental for other seniors. Here are some downsides of hospice care to be aware of.

The Feelings Of Guilt

You might have decided hospice was a better solution for your senior parent or loved one than a nursing home, but now that they’re about to enter hospice care, you feel worse than ever. You know being in a hospice programs isn’t necessarily a death sentence, but you can’t help but feel like it is.

The guilt might eat you up, leaving you second-guessing your decisions moving forward and not always ensuring the best care for the senior at a time when they need it most.

The Quality Of Care Can Vary

Most cities have several hospice organizations who will provide services. This means that each hospice program will likely be different.

Therefore, the level of care a senior receives in hospice is not uniform across the board, as you’ll recall the same staff isn’t always available around the clock.

In those situations, you’d have to step in as an adult child and caretaker or hire another caretaker to do it. You can also seek the assistance of social workers. 

Not All Medical Services Are Provided

We’ll discuss this further in the next section, but hospice omits a surprising number of medical services. This can leave you in the lurch if you’re expecting your senior parent or loved one to receive a certain level of care that the hospice center doesn’t provide. 

It Can Be Expensive

It’s worth underscoring the cost of hospice.

While it’s usually lower than an assisted living community or nursing home, it’s still an additional cost that can affect your financial situation, especially if you’re forced to pay for hospice out of pocket. 

It’s Harder Than It Seems To Find Good Providers 

Hospice care can feel like a revolving door between all the social workers, nurses, doctors, and other staff. This can make nailing down service providers hard, especially the ones you’re interested in. 

What Is Usually Not Included With Hospice Care?

The treatment provided at hospice care isn’t as all-inclusive as what the elderly can receive at a hospital. Here are some services and treatment options a senior might not receive.

IVs: It varies by facility, but some hospice centers do not provide patients in the final stages of life with IVs to replenish fluids or administer medications intravenously.

This may require checking into a hospital or moving to an assisted living community or nursing home and receiving hospice care there, as IVs should be available. 

Fertility Treatments: Hospice is not only for older patients. Younger people with terminal illnesses may also seek hospice care for comfort and quality of life. However, these facilities do not offer fertility treatments, which isn’t altogether surprising. 

Organ Transplants: Organ failure happens at an increasingly higher rate in the elderly. However, if a senior needs an organ transplant while in hospice care, they likely will not be able to receive one.

This can sometimes accelerate death, so you might decide to hospitalize the senior instead.

Chemotherapy: Medications are not offered as part of hospice across the board, and that includes chemotherapy. This goes back to the non-curative nature of hospice, which is about providing comfort.

You might have to seek another avenue if your senior parent or loved one must maintain their chemo regimen. 

Durable Medical Equipment: Depending on the hospice provider, another area of care that may be missing is durable medical equipment or DME. These items include everything from oxygen tanks to canes, walkers, wheelchairs, and even hospital beds. 

Disabled, nonmobile seniors benefit the most from DME. Without it, mobility and quality of life drastically decrease. 

What Happens If A Patient Doesn’t Want Hospice?

A patient who’s in hospice may decide they no longer want the service. 

Hospice will not hold the senior back. They’re required to put their name and signature on a form agreeing to end the care, then they can leave at will. 

If a patient decides not to choose hospice care, there are several alternatives available, depending on their specific needs and the stage of their illness:

Continued Curative Treatment: If the patient is still seeking potential cures or aggressive treatment for their illness, they can continue to receive curative treatments. This might involve ongoing medical interventions, surgeries, chemotherapy, radiation, or other therapies aimed at treating the illness.

Palliative Care: Palliative care is similar to hospice care in that it focuses on providing relief from the symptoms and stress of a serious illness. However, unlike hospice care, palliative care can be provided at any stage of an illness and can be delivered alongside curative treatments. It aims to improve quality of life for both the patient and their family.

Home Health Care: If the patient requires medical care but prefers to stay at home, home health care services can be an option. These services typically include nursing care, physical therapy, pain management, and other medical services provided at the patient’s home.

Residential Care or Nursing Home: For patients who need round-the-clock care but do not qualify for or do not wish to receive hospice care, a residential care facility or nursing home may be appropriate. These facilities provide care and assistance with daily living activities in a more controlled environment.

Managing Care Independently: Some patients may choose to manage their care independently, without any specialized end-of-life care services. This might involve regular consultations with their healthcare provider and support from family and friends.

Other Support Services: There are various community and health services available that can provide support in areas such as counseling, physical therapy, nutritional advice, and more. These services can be tailored to the patient’s specific needs and circumstances.

The choice of not opting for hospice care depends on the patient’s personal preferences, their medical condition, and the advice of their healthcare providers.

It’s important for patients and their families to discuss all available options and make a decision that aligns with their values, goals, and medical needs.

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