Thinking About Hospice Care? Common Questions and Concerns

Betty Anne and her daughter, Alice, were enjoying a quiet breakfast on the porch one spring morning when Betty Anne suddenly lost her grip on her coffee mug. Thankfully, the beverage had been sitting out long enough that the liquid wasn’t scalding, though the spill still left a noticeable pink blotch on Betty Anne’s leg. As Alice leaped up from her chair to assist her surprised mother, she couldn’t help but sigh inwardly. Betty Anne’s hands had been shaking so badly she could barely hold a fork lately, let alone a coffee mug. Anyways, even if she could, she no longer had an appetite.

After her congestive heart failure diagnosis 7 months ago, Betty Anne’s health had been rapidly deteriorating. With her weight dropping drastically in the last couple of months, she had been unable to perform basic self-care activities like toileting or bathing. Between Alice and a hired caregiver, Betty Anne was under constant 24-hour care. Alice was growing more and more dismayed by her mother’s declining health – they couldn’t even enjoy a morning coffee together anymore, it seemed.

After helping her mother to bed for a mid-morning nap, Alice sank down onto the sofa and put her face in her hands. During their last few visits, the doctor had been gently hinting that a conversation might arise soon…Alice had just been hoping to prolong that talk as long as possible.

What am I going to do now? she thought.

Is It Time?…

If Alice’s experience with her mother sounds familiar, you may have asked yourself the above question.  Knowing what to do while caring for someone dear to your heart is never easy, nor is discussing the prospect of placing him or her in hospice care. If you are thinking about hospice for your senior but are unsure of where to turn or what questions to ask, don’t despair. Instead, start by doing your research. First, it is important to understand what we define as hospice care.

Hospice Care: What It Is and What It Isn’t

Hospice is an “end of life” care whose main goal is to alleviate pain and provide the most comfort possible to patients during their last months and weeks. End-of-life treatment includes medical care and physical/mental support for both the patient and his/her family. Many patients receive professional medical care in hospitals and nursing homes, though two-thirds often choose to be cared for in their own home. Hospice is not to be confused with Palliative care, which includes emotional support and day-to-day help for someone with a life-threatening illness while doctors pursue a cure. Rather, hospice care usually starts with the diagnosis and continues until the patient passes.

From the definition, “end of life care”, hospice can be a frightening thing to start thinking about. In the above story, Betty Anne’s daughter was hoping to prolong talking about hospice as long as possible. However, hospice nurses and caregivers are there for you and your senior in this emotionally-difficult time. It is important, therefore, for your loved one’s comfort and sense of peace that you begin considering hospice sooner rather than later.

Should I be Thinking About Hospice Now?

Typically, most people wait too long to start thinking about hospice care. Why is this? Part of the reason is that many consider end-of-life care as the stage of “giving up”. Hospice carries with it a stigma of being the place of no return. However, this is a despairing and, quite frankly, faulty, assumption. Hospice doctors and nurses are there to help seniors pass quietly and with dignity, and to enjoy their last months as much as possible. Making the decision to place your loved one in hospice care should not be confused with giving up on him/her but understood as the best decision for your loved one’s well-being.

The best way to consider if your senior is ready for hospice care is simply to talk to their doctor. Don’t wait for the doctor to bring it up – ask! You should also then speak with a hospice care provider (or many) to help you make the right decision.

Questions To Consider

As you are in communication with your loved one’s doctor, it may be helpful to start thinking about these questions to get a better understanding of his/her needs:

How long does he/she have left to live?

Typically, the time frame is between a year and 6 months. Before a year may be too early, but after the 6-month period may be too late. Many families wait until the last week or two of their loved one’s life to call Hospice. However, by waiting, the senior is kept from receiving additional specialized nursing care and medical equipment related to their terminal illness at no cost much earlier.

Can he/she perform ADL’s?

It’s not unusual for seniors to have difficulty performing ADLs as they age. In-home caregivers and nurses can help seniors with general personal hygiene and home maintenance. ADLs include bathing and hygiene, dressing and undressing, movement, toileting, and eating. However, if a senior is showing rapid signs of decline in personal care, it may be time to consider hospice care.

Does he/she have continence issues?

The older a person becomes, the higher the probability they will have common continence problems. If your loved one has little to no control over their bowel movements, it may be time to consider hospice care.

 Severity of memory loss?

Dementia causes a gradual loss of thinking and remembering. It also changes one’s reasoning abilities, too. If a senior is having difficulty remembering common physical needs such as eating or sleeping, it may be time to think about the next steps. A memory that is having a harmful impact on their well-being is often part of the discussion when it comes to considering hospice.

Other Questions to Consider…

Who covers the cost?

Typically, Medicare will cover the cost of hospice for beneficiaries. About 85% of end-of-life care costs are covered by various government entities. These include Medicare, Medicaid, Veterans Administration, and the Department of Defense. However, private insurance plans and HMOs may also pay, though they may have a preferred provider. A small copay might also be required for medications. Medicare is required to pay for all medically necessary hospital/doctor care under Parts A and B, regardless of cost or condition of the patient. If you have Medicare and are curious about your benefits, visit Medicare.gov.

How Do I Find a Hospice Agency?

It is advised that you search for a hospice provider close to your area. Most communities have more than one hospice provider, making the decision difficult. Thankfully, your doctor and hospital discharge planner can help you find a hospice agency. As you talk with your doctor and family, you can look for providers by…

• local referrals: besides your doctor, you can also find hospices in your area by looking them up in the phone book. For more info, click here.
• state resources: you may also contact your state’s hospice organization or its department of health or social services to get a list of licensed agencies.
• national resources: contact national organizations like the National Hospice and Palliative Care Organization or the National Association for Hospice Care.

Found a Hospice For Your Senior?

Do you think you have found hospice care for your loved one? To ensure the quality of care, consider asking the agency the following questions before moving forward:

• how often will the caregivers visit?
• are the doctors and nurses certified in palliative care?
• will the patient’s primary doctor still be involved in medical care?
• will the nurse or clinician be in the house when the patient is actively dying?
• are there limits on radiation and chemotherapy?
• what’s expected from family members?

Stay Encouraged!

Considering hospice for your senior loved one is never easy. Above all, don’t lose hope or become overwhelmed- there are nurses and caregivers there to help you! With these tips in mind, start investigating your options today.