Can You Opt for Hospice Care Even if You Are Not Dying?

Erica Manfred, 80, suffers from lung cancer and COPD.  She lives alone, about 1,500 miles away from her only living relative – her daughter. Her friends are all older too, and have their own health concerns, so it would be a last resort to have to bother them for anything. If she fell, she was on her own, since she didn’t even have a button to alert 9-1-1. 

Erica had a wake-up call recently when she had respiratory failure, fell ill with pneumonia, and was hospitalized. She called her “young” friend, who was 60, to help her out, but could only depend on her so much, since she has a life of her own. Erica was a “solo ager” who realized that her situation was not ideal, and something needed to change.  

Erica Opts for Hospice Care 

Erica had been receiving medication for her cancer on and off for years, but it had some terrible side effects, including fatigue, diarrhea, skin infections, loss of appetite, and vocal cord nodules. For this reason, she had decided to forgo any more drugs for her cancer since they were to her, worse than the disease. In doing so, Erica became a candidate for hospice. 

For many of us, the word “hospice” is equated with imminent death. People are under the impression that they can’t call hospice until “the grim reaper is at the door.” When asked if hospice solely serves the terminally ill, the technically correct answer is “yes.” However, as a practical matter, the answer is “not necessarily.”  

Hospice care is a type of medical care whose purpose is to maintain or improve the quality of life for people suffering from terminal illnesses, diseases, or conditions that are more likely than not to lead to death within six months. Its primary focus is on offering comfort and support to both patients and their families as much as possible. Hospice does not hasten death or “impose a death sentence” on someone.  

Erica Wants to Enjoy the Time She Has Left 

When exploring her options, Erica learned from her cancer center that if you have a terminal disease such as cancer and are not pursuing curative treatment, you can go on hospice with a doctor’s referral. Here are some other things she found out:  

  • Some people stay on hospice for years. They can go off hospice if they decide to pursue curative treatment. 
  • A doctor must certify that the patient is not likely to live more than six months to be eligible for hospice. That may sound frightening, but it is in no way the same as a doctor telling them that they will surely die within six months of being diagnosed. 
  • To qualify for hospice, you do not have to die within six months of being accepted. It simply means that you will need to be reevaluated every six months to see whether or not you’re still eligible to receive hospice care. Sometimes, people on hospice cannot continue receiving hospice care because their health has improved too much for them to qualify again. 
  • Under hospice care, medical experts make house calls to the older adult. This can be a great relief for those who are too frail or ill to visit the doctor’s office. Doctors also coordinate treatments to ensure that each hospice patient is as comfortable as possible.  
  • If a patient is suffering from cancer, for example, he or she would be offered extensive pain-killing drugs, but not radiation or chemotherapy. Frequent trips to hospital emergency rooms are generally avoided. 
  • Many people are unaware that hospice care provides families with more support than they would receive from standard medical treatment.  
  • Families receive guidance, support, and bereavement therapy, if desired. 

Hospice Has Its Issues Too 

Erica is having a positive experience with hospice care so far. She enjoys when the kind nurse visits her home, and most of all, she feels like she has peace of mind. The care she receives though, in her opinion, is not nearly enough. She knows she will likely need more care in the future, or perhaps she will be “thrown out of hospice for not dying fast enough.”  Either way, she knows she needs to plan for what happens next, if hospice care at home is not her final destination.  

Not everyone has a positive experience with hospice care, unfortunately. Issues sometimes occur, including delays, no shows, and unanswered calls, fraud, lack of inspections, and other issues, as described in my recent article on the subject. Also keep in mind that hospice care isn’t always covered by Medicare. Some patients may require a different place to live during this phase of their life when they need extra care. Care in these settings is not covered under the Medicare Hospice Benefit (unless you’re one of the few people living in one of the area’s few dedicated hospice facilities) and it’s not covered under Medicaid. This is one reason why it is a wise idea to explore the option of hospice in a nursing home and to plan ahead for nursing home care, where you know your loved one will get the 24/7 care he or she needs. Learn more about this and what happens if and when someone “graduates from hospice” here.  

Plan in Advance for Long-Term Care 

If you or any of your loved ones have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your planning documents reviewed in the past several years), now is a good time to plan and get prepared! Among other services, we offer peace of mind through our four levels of lifetime protection planning:    

Level 1 — Incapacity Planning is about protecting your assets from lifetime probate, also known as guardianship and conservatorship. Everyone over the age of 18 should have this type of planning in place.    

Level 2 — Revocable Living Trust Estate Planning is about protecting your assets from lifetime probate and after-death probate, keeping in mind that using only a Last Will and Testament to transfer your assets at death forces your estate through the nightmare of after-death probate. All individuals and families who have children and/or financial assets should strongly consider Level 2 Planning.    

Level 3 — Living Trust Plus® Asset Protection Planning provides protection from probate, lawsuits, home care, and assisted living expenses by allowing access to Veterans Aid and Attendance benefits, and nursing home expenses by allowing access to Medicaid. This type of planning is done by clients who are typically retired and either still healthy or have recently been diagnosed with (or have a family history of) dementia or some other illness that is likely to result in the future need for long-term care.     

Level 4 – Life Care Planning, Medicaid Asset Protection, and Veterans Asset Protection provides comprehensive planning and filing services, often at times of crisis, though this type of planning can be done anytime someone is beyond the first step of the Elder Care Continuum aka Aging Continuum.     

If you have not done the appropriate level of planning, or had your planning documents reviewed in the past several years, please call us today:    

Northern Virginia Elder Law Attorney: 703-691-1888           
Fredericksburg, VA Elder Law Attorney: 540-479-1435           
Rockville, MD Elder Law Attorney: 301-519-8041           
Annapolis, MD Elder Law Attorney: 410-216-0703   

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.