A New York Times article published today discusses a topic near and dear to my heart: the challenges of dying at home.
I have written about this topic extensively, including in my book, The Reluctant Caregiver. I also published an article, “Why dying at home is not all that it’s cracked up to be,” on The Caregiver Space that generated a passionate discussion. Some people thought I was anti-hospice, and that definitely isn’t the case. I think home hospice care, when it’s available in a well-funded and well-staffed form, is a wonderful concept that can support a good death.
But as Paula Span points out in her NYT article, there are challenges and limitations in real-world home hospice care. One issue that I can personally relate to is pain management. My mother suffered because I could not adequately manage her cancer pain at home with the drugs available to me. There was also the battle with her doctor just to get her enrolled in home hospice, which came much too late to be effective.
Caring for the dying at home can be physically strenuous. I struggled to move my mother in bed to change sheets and prevent bedsores. Before she was bedridden, helping her to and from the bathroom was also a challenge. I was a 40-year-old woman in decent shape. But for elder spouses of the dying who may have health issues of their own, it can be overwhelming and untenable.
Palliative care specialists at Harvard Medical School recently published an article in the New England Journal of Medicine suggesting improvements to hospice care, and I agree with their recommendations. For those determined to die at home, it’s essential to have have sufficient home health care services so that families are not overwhelmed. This includes nursing care and personal aide services but also equipment like medical beds. The authors also suggest alternatives that are underutilized, such as inpatient hospice care. This was a suggestion that was made in my father’s case, but there was no bed available at the time of his hospital discharge, so he was sent to a skilled nursing facility instead. We met with the inpatient hospice representative and I appreciated the personal aspect of the care, wanting to get to know him, asking what kind of music he liked, etc. I so wish he could have died in that setting. It’s what I would want for myself.
Hospice units within hospitals is another alternative. This offers access to end-of-life care such as pain management but rooms can be configured to be more home-like by removing unnecessary monitoring machines and having hospice-trained staff provide palliative care. It can be a good alternative in areas without freestanding inpatient hospice facilities.
It’s important to think about these options for yourself and your loved ones now so that you are better prepared to make the best choice for your situation when the time comes.