What does it require to help Mom die at home?

While 70 percent of us want to die at home, only 30 percent do.

Why the discrepancy? While there are many reasons, one big one—in my experience—is that because dying at home is unfamiliar, it is also daunting. It is true that we can feel quickly over our head if there is a medical need we feel we can’t manage. Pain is the big one. We don’t want a loved one to be in pain and certainly there are cases in which a death is better managed in or within the close vicinity of a physician or nurse.

However, there are also plenty of cases that, if a loved one is at home and under the management of a good hospice program, we can abide by their wish for a home death. But we should go into that death knowing what hospice provides and what the family will need to provide.

Hospice provides a team including a nurse, a certified nurse assistant (CNA), a social worker and a chaplain. They also provide medications, a hospital bed, a bedside toilet, a wheelchair—most covered by Medicare, and a 24/7 hotline, should any urgent needs arise. Unless death is imminent, the nurse typically visits weekly, the CNA comes twice/week for about one hour to bathe the patient, the social worker comes in weekly to support both the patient and their extended family, and the chaplain visits as needed. In other words, aside from about five hours a week of visits from professionals, the family carries the task of taking care of the physical, emotional and sometimes spiritual needs of their loved one.

Must someone be bedside 24/7? It really depends on the patient. Many are in and out of a sleep state, possibly needing a sip of water or someone to dampen their lips and mouth with a swab. Some may need scheduled medication to address pain or (very commonly) anxiety, before it arises. Adult diapers and bedding may need to be changed. Or someone may become agitated and simply need to feel the presence of a warm hand or voice. Also, there may be “unfinished business,” or words the patient wants to communicate to their family. Sometimes it is only as we are dying that our defenses drop and we can speak in ways we have not allowed ourselves before.

Writing about this makes me think of being pregnant with my first child and the many times I read and reread the section of the book “What to expect when you are expecting,” on signs that you are in labor. I remember calling the hospital twice before going in with my first, to speak with a labor and delivery nurse. If your loved one is enrolled in a good hospice program, you will have a similar safety net. The nurse and social worker will provide you a lot of information about what to expect as your loved one approaches death and then you can call them 24/7, if needed.

Finally, as someone can be “on hospice” for days, weeks, or even months, the main caregiver will undoubtedly need help. This is a sacred opportunity for extended family and friends to step in and I encourage you to do so.

Many people I’ve known who have have said it has been an important lesson in not only teaching them about living, but also defusing fears about dying. It was a lesson I relearned firsthand recently when taking a night shift at the bedside of a beloved great aunt.

These are the moments that can be a doorway into what is meaningful, rich and important in life: caring for one another, in sickness and in health.