There are many statistics that show a majority of people strongly prefer to age in place, to remain in their familiar home and community and not move to a nursing home. A 2014 AARP study found that 87% of adults who are age 65 and older polled said that they want to continue living in their existing homes, and those who are ages 50 to 64 show 71 percent want to stay in their homes, not relocate.
As families find ways to support their loved ones—by moving in with them, coordinating care partners who may be family members, friends, or professionals, using remote care technology—experts also recommend planning for an end game.
“Research has found that 8 out of 10 people would prefer to be at home at the end of life, if that’s possible,” said Jon Radulovic, vice president of communications at the National Hospice and Palliative Care Organization. “Sometimes that isn’t a possibility but for many people it is and hospice care works to make this happen.”
The choice to continue living at home with some degree of assistance as age and some chronic conditions make daily living challenging is something that many people are able to discuss and plan for with their loved ones. All too often though it is more difficult to talk about and plan for the death of that same individual, and this can lead to not dying at home as they may also wish to do.
“If someone has not been under the care of hospice and the family calls 911, it can be more complicated [than it would be with hospice care],” Mr. Radulovic said. “The body would need to go to the hospital, there would be many questions that would need to be addressed to confirm that nothing illegal has taken place.”
Certainly going to the hospital can sound like a relief in some ways, but it may put more of a burden on a family caregiver. “Without hospice, having to add all the necessary inquiry on top of the death of a loved one can be extremely stressful and potentially difficult on the family,” he said.
Signing up for hospice can be scary or just unappealing when people are uncomfortable with death, yet this proactive move can possibly make it a person’s desire to pass away at home happen with less stress for their loved ones.
“The majority of hospice care provided in the U.S. is in the home, whether it be the patient’s home, a family member’s home, or nursing home if that were the patient resides,” Mr. Radulovic explained. “Hospice care is provided by an interdisciplinary team of professionals and trained volunteers that address not only medical needs (like pain management and symptom control) but also psycho-social and spiritual needs. No two people would have the exact same needs and the hospice develops a care plan unique to each patient. Some of the professionals that are included on the hospice staff are doctors, nurses, social workers, counselors, allied therapists, home health aides, spiritual care providers and staff that help with grief and bereavement. The family caregivers are also part of the plan of care so they would receive support and caregiving training from the hospice team. It’s important to remember that hospice is not necessarily in the home 24 hours a day but they are always available by phone 24/7.”
Since hospice is not typically round-the-clock care, it can be complemented with in home care services to give family members a break.
A person has to qualify for hospice and this is done when a physician certifies that if the individual’s medical condition follows the expected course of the person passing away within six months. Mr. Radulovic notes that does not mean the patient is limited to six months of hospice care, just that they continue to meet the criteria.
Hospice will provide equipment, supplies and medications related to the terminal prognosis.
Mr. Radulovic encourages people to consider hospice sooner than they might think it is necessary.
“Too many people wait too long; about a third of patients die with 7 days or less which makes it hard to take advantage of all the services hospice has to offer,” he said. “Hospice is ideally suited for the final months of life, not just the final days. So in thinking about planning, it’s important to access hospice care before death is imminent. Another way to think about it is that hospice really focuses on helping a patient live as fully as possible for as long as they have left. It’s a misconception that hospice is what you do when you are “giving up hope.” Unfortunately, that’s still how some people think about hospice care.”
There are many resources online and possibly in your community to tap into when considering hospice.
The National Hospice and Palliative Care Organization has the “Moments of Life: Made Possible by Hospice” website and search tool to find a local hospice. CaringInfo is another site that provides tips on advance care planning.
“Advance care planning involves completing an advance directive (or living will) and gives a person the chance to put their wishes in writing regarding the care they would or would not want at life’s end,” Mr. Radulovic said. “Anyone who wants to do all they can to make sure their wishes are followed should take the necessary steps for advance care planning, and CaringInfo.org offers information and free state-specific advance directive forms that can be downloaded free of charge.”
The Conversation Project is another online resource that can help people talk about their wishes for end-of-life care.
Ultimately, much like making the choice to continue to live at home when assistance is needed, there needs to be talking and planning for one’s death. “The best time to do this is well before you’re in a medical crisis,” Mr. Radulovic stated. “Take the time to figure out what is most important and talk with family, loved ones, and other healthcare providers.”
Family caregiver and author Lisa J. Shultz talks about how she starts the new year to have enough energy for caregiving.
If you aren't sure what elder care is and how your role as a family caregiver fits in, we've outlined different types of care in this article.
We have our top five blogs based on readership in 2019. Take a look at this list to review topics from bathroom hazards to caregiving myths.