Many people have heard the term “hospice,” but most don’t really understand what it means. Even though this is a very sad and difficult issue, it is very important that you have enough advance knowledge and advance preparation so that before you are admitted to hospice services you have enough information to know when to make that call.
Hospice provides care for people with a terminal illness. But hospice isn’t only about dying. Hospice is about living as fully as possible for as long as possible. With a team of compassionate people focused on alleviating suffering and pain, hospice care brings comfort, dignity and peace to help people with a life-limiting illness and provides support for the family and friends who love and care for them.
Also, hospice is not a place. Many people think that hospice care is provided in a hospital setting or in a hospice in-patient unit. Hospice is a philosophy of care, largely based on the palliative care model providing comfort and support to people as they go through the process of a serious illness. For the most part, most patients receive hospice care at home surrounded by their loved ones.
If you or a loved one has received news from your doctor that the illness that they are treating is no longer in the curative phase but has become terminal, the focus shifts to a more thoughtful, palliative supportive model rather than curative treatment. The object of hospice is to provide enough care and support to allow the process of dying to take place in as comfortable a setting as possible.
According to the National Hospice and Palliative Care Organization (NHPCO), research shows that some patients actually improve when they enter hospice. It’s because of the intensity of care and because people have stopped some of the treatments that often make them feel a lot more ill than they have been feeling.
Care is also highly identified as being connected to the family as well. Because all patients going through the process of dying need to have the love and support and care of their family members as well, both the patient and the family are identified as the unit of care.
Last year, 1.65 million dying Americans were cared for by hospice. Yet, there are some important facts about hospice that people don’t know. And this may be keeping people from getting the best care possible, when they need it most. Here are 10 things about hospice that you should know if your loved one is facing a serious illness. (Source: NHPCO, April 3, 2013)
- Hospice is not a place. It is high quality medical care focused on comfort and quality of life.
- Hospice does not cost the patient. Hospice is paid for by Medicare, Medicaid and most insurance plans and usually doesn’t cost the patient anything.
- Hospice serves anyone with a life-limiting illness, regardless of age, type of illness, who you are or where you live.
- Hospice serves all people. Hospice serves people of all backgrounds and religions. The core values of hospice allow people to be with family, including spiritual and emotional support. Treating pain crosses all cultures.
- Hospice provides a home-like environment. Research has shown that most Americans would prefer to be at home at the end of their lives. Hospice makes this possible for most people.
- Hospice does not have to be at home. Hospice also serves people living at nursing homes and assisted-living facilities.
- Hospice patients and families can receive care for six months or longer.
- Referring physician can stay involved. A person can keep his or her referring physician while getting hospice care.
- Hospice offers counseling to the family. Hospice offers grief and bereavement services to help them adjust to the loss in their lives.
- Research has shown people receiving hospice care can live longer than similar patients who do not opt for hospice.
Let’s revisit #2. The Medicare hospice benefit pretty much acts as the gold standard in hospice care in that it covers all of the services the patient would need: the doctor, the nurse, the social worker, pastoral care services, the drugs, the biologicals, the volunteers for grief support, and any other services you would need to afford you an individual care opportunity that people really do benefit from as they move towards the end of their lives. So payment is not an issue.
Furthermore, you don’t have to be imminently dying to receive hospice services. It’s a benefit designed to care for people during the last six months of their lives. A person can remain in hospice services with certification from your doctor that you are still in fact terminally ill.
If this information about hospice surprises you, take the time to find out more. The best time to learn about hospice is before you or someone in your family is facing a medical crisis and has to make a last-minute decision in a moment of crisis. That casts a very long shadow — you don’t want your loved ones wondering for a very long period of time “What did Mother want?” when she didn’t have the opportunity to speak for herself.
If you don’t want someone you don’t know making decisions about your care at end of life, or your care if you’re going through a serious illness, the time to act is now. Advance care planning is absolutely critical because it’s talking about your inability to speak for yourself.
It’s not a difficult process. It can be confronted. Your opportunity to do the right thing is now.
In conclusion, if you are the spouse or adult child acting as your loved one’s primary caregiver, be gentle and patient with yourself. The journey of caregiving has been compared to a marathon race. Making sure your loved one gets the best care requires that you take good care of yourself.
Be sure to exercise regularly, get enough sleep, and eat well. Do things that you enjoy each day to handle today’s challenges and to prepare for the road ahead. Finally, do not be afraid to ask for help — any good estate planning attorney can draw up the necessary documents for your loved one to sign.
Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.