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Planning for the cost of hospice can help ensure compassionate care, not financial pain

by Amanda Lambert | Contributor
November 8, 2022

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The idea of hospice can elicit strong emotions since it can mean thinking about end-of-life care. Losing a loved one is a roller coaster journey of grief, sadness, gratitude, conflict and compassion. It is human nature to hold on to those you care about, but you are also responsible for ensuring that your loved one is as comfortable as possible. And that their wishes are honored.

That is where hospice comes in. Misunderstandings about hospice are common, and we are here to clarify what hospice is, how it works and potential out-of-pocket costs. Hospice is gaining in acceptance; the sooner you consider it, the better. Most people wait until a loved one is close to death and bring hospice services to help when they could have had the support much sooner.

Although the cost of hospice is covered by insurance, it does not provide round-the-clock care, which can come as a shock to families. We will discuss the potential cost of care to augment hospice services. The cost of hospice care should be part of your long-term financial planning that includes home care, senior living options and the possibility of nursing home care.

What is hospice?

You may think of hospice as a place, and it can be, but most hospice care is provided in the patient's home. Home can be the house your loved one has been for many years, or it could be assisted living or some other senior living setting.

At its core, hospice care is a philosophy and provision of medical care for people with an anticipated life expectancy of six months or less. Here are some of the fundamental characteristics of hospice care:

  • A doctor's order is required to qualify for hospice.
  • The individual decides that curative efforts are no longer likely to result in meaningful recovery.
  • Hospice care focuses on pain relief, spiritual comfort and quality of remaining life.
  • Hospice is not a death sentence. Many people live a long time on hospice, and some even recover to the point where they can be discharged from hospice.
  • Outpatient treatment for conditions other than the terminal condition that qualifies the person for hospice is permissible. Examples could include eye and dental or dermatology appointments.
  • Seeking hospitalization or emergency room visits that are not approved by hospice could disqualify you from hospice.
  • A hospice nurse is on call 24 hours a day for emergencies.

How do you know when to put someone in hospice?

Deciding when to start hospice can be heart-wrenching for families and can also lead to disagreements and conflict. Some family members may want to continue curative treatments, and others may see this as inhumane. Talk with your doctor and family before deciding on hospice care so that everyone is involved. Here are some things to consider when choosing whether to begin hospice:

  • What does your loved one want? If they have the ability and capacity to discuss hospice, then the decision is theirs. Their advance directives should be followed if they cannot decide due to cognitive impairment or some other condition.
  • Talk with your loved one's doctor about diagnoses and prognosis. Someone in their 90s with terminal cancer may reasonably not want to endure chemotherapy and would prefer to spend the time they have left with family.
  • Pain and other symptoms are getting more challenging to manage.
  • Frequent hospitalizations in the past six months.
  • Weight loss.
  • Increasing weakness and fatigue.
  • Challenges managing activities of daily living (ADLs) such as bathing, dressing, toileting, eating and hygiene.
  • Recurring infections.
  • Remember that you can cancel hospice anytime, and curative efforts can resume.
  • For a person who is older and frail, repeated doctor's and emergency room visits may be too much to endure and continue. Especially if your loved one is not mobile, taking them to outpatient visits is tiring and counter-productive.

How does hospice work?

Once a doctor writes an order for hospice, it is time to choose a hospice provider. Your doctor may have a recommendation, or you can ask friends and other health care providers. The hospice team specializes in end-of-life care and symptom and pain management, all overseen by a hospice medical director (an MD). The hospice team consists of the following:

The nurse

The hospice nurse is the axis of the wheel of care. The nurse evaluates your loved one's medical and emotional needs, develops a plan of care, orders durable medical equipment and other medical supplies, requests pain medication from the physician and provides support and education to the family.

At the end of life, the hospice nurse is familiar with specific signs of death. Understanding and expecting these signs can help you as a family accept and acknowledge when death might be near. This allows other family members who may be at a distance the time to visit. In the beginning phase of hospice service, the nurse usually visits one to three times a week and more when death is imminent.

Hospice aides

Hospice aides are a valuable part of the team because they help to bathe your loved one and perform other hygiene duties. They also change continence briefs, apply lotion and do range-of-motion exercises. Aides often have scores of patients to attend to, so their schedules could be variable and unpredictable. Hospice aides may only come two to three times a week for about an hour and more often at the end of life.

Chaplain

A non-denominational chaplain is available to provide spiritual guidance and support to your loved one and the family. The chaplain is entirely voluntary; if you prefer your personal religious or spiritual counsel, you have the right to that.

Social worker

The social worker assists families with investigating additional resources, finding a mortuary and offering emotional counseling to the family. If there are financial concerns, the social worker can assist your family with accessing programs to help.

Volunteers

Volunteers are a significant part of the hospice team. They can read to your loved one, run errands, provide pet and music therapy and perform other duties as assigned. Since insurance doesn't pay for these valuable tasks, volunteers fill these needs.

Bereavement support

Grief counseling and support are typically offered for a year after your loved one dies. Bereavement support is a Medicare requirement for hospice companies. If you or someone in your family feels that they need more in-depth grief counseling, a therapist specializing in grief and loss is a good option.

Who pays for hospice care at home?

The cost of hospice care is covered under Medicare, Medicaid and private insurance as long as you meet the qualifying criteria. However, since hospice may only cover several hours a week of care, that leaves many hours when your loved one does not have care or support.

For example, who will get their meals if your loved one is bed-bound? What if they need their brief changed or require assistance to the bathroom? It is not unusual for someone to be on hospice for many weeks or even months and have huge gaps in care. Some suggestions:

A elderly woman having tea and looking appreciatively at her daughter's care.
  • Hire private caregivers:

    Hiring private caregivers is an option many families choose, but it can be costly. Depending on where you live, hourly pricing can range between $20 and $60.

    The challenge is putting together a schedule that will take care of all of your loved one's needs throughout the day. Some families choose round-the-clock caregiving, which can be thousands of dollars per week.

  • Family support:

    Family members can provide much of the care your loved one requires, but if you are employed, that can be a financial challenge. If you have several siblings in the area, you can piece together a caregiving schedule that doesn't unfairly tax one person over another.

    Give careful consideration to the idea of leaving your employment to provide care. The financial consequences of giving up or reducing work can be significant.

  • Combination private caregiving with family assistance:

    To keep costs down, you can hire a caregiver for some care tasks and ask the family to provide the rest. A national caregiver shortage could make it challenging to get caregivers when you need them.

  • Assisted living:

    If your loved one is already in assisted living, you can request a higher level of care, which will cost more but could be well worth it. Most assisted living communities can provide on-demand care and services at the highest level of care.

    They can bring meals, change briefs, accompany your loved one to the toilet day and night and respond to emergencies. Most assisted living communities work closely with hospice staff.

What if your loved one is at home and not in assisted living? You can move your loved one into assisted living at that point to take advantage of the offered care services. Chances are that assisted living will cost far less than round-the-clock private care.

The monthly median cost of care for 2023 will be an estimated $4,774 but likely much higher depending on where you live and the level of care required. But this is less than potentially paying $3,000 a week for care at home, which could be complex to manage.

Does Medicare cover hospice?

Medicare and Medicare Advantage plans both pay for the full cost of hospice. This includes most durable medical equipment, such as a hospital bed and oxygen, medical supplies, medications and care. But remember that Medicare does not pay caregivers to run errands, cook, clean or provide on-demand services. On hospice, you probably won't be able to choose your aide or when they come to help you.

There are complicated rules under Medicare for hospice. For example, suppose your loved one is under hospice care and falls and decides to go to the hospital. In that case, Medicare will no longer pay for the cost of hospice, and the hospice company will discharge you until you return home and decide if you want readmission to hospice.

Under certain conditions, the hospice company may hospitalize your loved one with a contracted facility for short-term management of symptoms or pain control. In those cases, your loved one is still under hospice.

Who pays for residential hospice?

Residential hospices are home-like communities that specialize in caring for patients with a terminal illness who cannot be managed safely at home. They have 24-hour-a-day nursing care and round-the-clock aide service.

Your insurance pays for the cost of hospice services (staff, equipment, medication, etc.), but you are responsible for room and board, which can run up to several thousand dollars a month. Residential hospice may not be available in your community.

What is the difference between hospice and palliative care?

You may have heard of palliative care but are confused about the difference between palliative care and hospice. Palliative care aims to ease pain and suffering, but you do not have an illness where you are likely to die in six months.

Some examples of illnesses that benefit from palliative care are cancer, kidney disease, general debility, heart failure and COPD. You can continue to seek active treatment for your condition, but palliative care focuses on symptom management and quality of life as defined by you. Most insurance will pay for palliative care, assuming it is available in your health care system.

If your illness transitions to a more serious phase where your condition is considered terminal, you can request admission to hospice service. Many patients prefer to start with palliative care and move to hospice later. You can speak with your doctor about the possibility of palliative care if you think this is something that would benefit you or a family member.

Long-term care requires long-term financial planning

Undoubtedly, insurance-covered programs like hospice and home health offer significant benefits. But, financial planning for the long term involves not only what insurance will cover but what it won't. Long-term care costs can soar, and the last thing you want to be thinking about when a loved one is suffering is finances.

No one likes to think about end-of-life, but it happens to everyone. Being prepared emotionally and financially will allow your family to be together with compassion and comfort.

Alliance America can help

Alliance America is an insurance and financial services company dedicated to the art of personal financial planning. Our financial professionals can assist you in maximizing your retirement resources and achieving your future goals. We have access to an array of products and services, all focused on helping you enjoy the retirement lifestyle you want and deserve. You can request a no-cost, no-obligation consultation by calling (833) 219-6884 today.

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