Dr. Nathan Gray wrote an op-ed which appeared as a full-page ad in the Los Angeles Times and other newspapers on February 16, 2020. He is an Assistant Professor of Medicine and Palliative Care at Duke University School of Medicine, as well as an artist who draws informative comics on medical topics. His editorial made some serious points which people need to consider before making the final decision about where they want to die.
Are We Truly Living Longer or Taking Longer to Die?
While experts often tout how they have extended the lives of senior citizens by a few months, they rarely describe what those additional months are like for people who are dying. Often, the dying are nauseous, exhausted and in pain. In many cases, I have observed that people in the final months of their lives are not truly enjoying themselves, feeling alert, and chatting with adoring loved ones. They often spend those last months suffering through an extended, unpleasant death. During this period of time, they are can be miserable and unhappy. They may be barely aware of what is going on.
Who Will Care for You If You Die at Home?
If your spouse or an adult child is going to be your sole caregiver, other than a few short visits from a hospice team each week, are you expecting too much of your loved one when you ask to go home to die? Are they going to be able to help you get up during the night to use the bathroom, manage your medications, bathe you, and feed you, while still meeting their own basic needs? Studies show that 30 percent or more of caregivers end up dying before the patient under their care. Are you willing to take the risk that someone you love could die while caring for you? Is this the burden you want to place on your beloved spouse or other family member?
Can Your Family Afford for You to Die at Home?
Another point made by Dr. Gray is the high financial burden of having a loved one die in your home. The caregiver may have to give up their current job, or they may have to hire a paid caregiver to assist them. In some cases, they may have to do both ... quit their job and hire extra help to do the things they cannot manage on their own. As a result, dying at home can create a financial burden for your spouse or adult child, making it more difficult for them to pay the bills. You may be so "out of it" from pain medication and your loss of awareness, you may not even realize how hard life has become for your spouse or adult child, and how much stress they are under.
Will Home Hospice Help?
Fortunately, home hospice will provide some assistance to your family if you choose to die at home. Hospice agencies are reimbursed about $200 a day to provide you with necessary medical equipment, pain medication, and a few visits from nurses each week. This compares to the approximately $2000 in reimbursements which hospitals receive to provide you with 24 hour-a-day care as long as you stay there. Obviously, as much as they try to provide all the help they can, home hospice providers cannot do everything a hospital can do during the last few months of your life.
It is important for people to know that Medicare will pay for a few weeks in a skilled nursing facility, if you go directly there after having stayed in a hospital as an admitted patient (not just under observation) for at least three nights. If you have a low income and few assets other than a house and/or car, Medicaid will pay for an extended stay in a skilled nursing facility, but you or your family should apply for Medicaid as soon as the patient moves into the facility. You may need to get an expert to help you with the application process. Ask the nursing home to help you or get a referral to a service which is able to help.
Have You Planned Ahead?
If you have made arrangements in advance for long-term care insurance, or you have moved into a Continuing Care Retirement Community prior to developing a terminal illness, then you may be better prepared to die in your home or at the retirement community where you are living. Your long-term care insurance or the CCRC where you live will help your spouse or other family members manage your care during the end of your life. Caring for you during this emotional time will be much less of a burden on your family if you have planned ahead.
It could be helpful to read "Long-Term Care: How to Plan and Pay for it." (Ad) The information in this book will make your decision to die at home much easier for everyone.
However, if you do not make arrangements in advance, you may wish to rethink your decision to die at home. Spending those last few weeks in a hospital or skilled nursing facility may be the last, considerate action you can take to help your family be under less stress at the time of your death. It's something to think about.
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