One of the most popular PBS television series of the past few years, “Call The Midwife” is based on the memoirs of Jennifer Worth, an actual London nurse-midwife. The series tells the stories of a group of dedicated, bicycle-riding midwives in a 1950’s and ‘60’s-era London neighborhood. As the episodes unfold, you come to understand how the intimate work of helping families through the natural process of pregnancy and birth knits these health care workers into the lives of their community.
The only thing as common to our human experience as birth, of course, is death, and I’ve often thought that there are a lot of parallels between the work of midwives and the work of hospice nurses. Both bring their care and expertise to guide people through a natural, but difficult, transition of life. And though birth is usually a joyful event and death is commonly considered sad, hospice workers, no less than midwives, are focused on life’s potential.
If that seems an odd observation, let me share with you a bit of this “statement of philosophy” from the National Hospice and Palliative Care Organization:
“Hospice recognizes that the dying process is a part of the normal process of living and focuses on enhancing the quality of remaining life. Hospice affirms life and neither hastens nor postpones death. Hospice exists in the hope and belief that through appropriate care, and the promotion of a caring community sensitive to their needs that individuals and their families may be free to attain a degree of satisfaction in preparation for death. Hospice recognizes that human growth and development can be a lifelong process. Hospice seeks to preserve and promote the inherent potential for growth within individuals and families during the last phase of life.”
Working in home care, it is often our privilege to work in partnership with hospice teams, including nurses, social workers, volunteers and clergy. So I’ve seen that “potential for growth within individuals and families” in action. It occurs when pain and discomfort are alleviated and the dying person is given an opportunity to reflect and to be present with friends and family.
I saw this in a hospice client I met several years ago. His daughter had brought him to spend his final days in her home, where his hospital bed was set up in sunny room. When I visited one morning, I found him comfortable, lucid and in good spirits. He smiled as he told me some of his life’s accomplishments. It was a classic American immigrant story of hard work and success in business, enriched by a loving network of family and friends. His content with his life and acceptance of death were clear, so when I learned that he had died later that same day I was happy knowing that everything seemed complete to him, and I believe it did to his family as well.
Obviously not every end of life is so tidy, and I don’t want to minimize in any way the physical and emotional pain that often accompanies dying. But I do know that ignoring death doesn’t make it go away, so I often find myself advocating for hospice and trying to explain why the word shouldn’t terrify patients or their families. It does not mean “giving up,” and it doesn’t show a lack of love, caring or even hope.
In fact, several studies show that, for patients with many medical conditions such as end-stage congestive heart failure and several cancers, those receiving hospice care actually tend to live longer than those who do not receive this service. Why this might be is somewhat speculative, but I can easily imagine that better treatment of symptoms, including pain, eases both physical and emotional distress and strengthens the body.
That’s why it’s a shame that so many people whose quality of life would benefit from hospice care wait until the final days of life to accept it. Unlike other in-home care, hospice services are paid for by Medicare or health insurance, so they cost families nothing. Hospice provides many medications as well as needed medical equipment such as hospital beds and wheel chairs. It provides regular nurse visits to help manage symptoms and an on-call nurse to respond to urgent issues day and night. It provides other support by social workers, clergy, grief counselors and volunteers. It may even provide music therapy, aroma therapy or massage. And it provides a limited number of hours of a home health aide to supplement the care of paid or unpaid caregivers.
About a month ago I was in the home of a client who had just been discharged to home from the local hospital. Her family decided that, in addition to having the assistance of our live-in home health aide, she would benefit from hospice care. The hospice nurse, someone I’ve known and respected for several years, came to do the initial evaluation and care plan for this client. As she walked the family through the plan of care and let them know what to expect, I was again impressed with how comprehensive and holistic the hospice approach can be. Yes, very specific symptoms were addressed, but so, too, were the woman’s personal goals and desire to be as independent as possible.
It was important to her to be able to go out to lunch with friends, and the nurse assured her that that would be fine. She wanted to walk independently as much as possible, so we discussed striking an acceptable balance between safety and autonomy. Throughout the meeting, the RN educated the family and at every step reassured them that they were in good hands and would have every support for their mother’s needs. By the time she finished everyone in the room was peaceful and smiling. The hospice nurse was just doing her job, but what a gift she gave them.
At its best, choosing hospice service can be a positive step patients and families can take to lighten their load and help them live fully as long as they are alive. And if a patient’s health improves, he or she can suspend hospice service and return to traditional medical care at any time. We’ve had a number of clients who have astonished their doctors and actually thrived or stabilized with hospice care.
Birth and death, midwifery and hospice. “We must endure our going hence e’en as our coming hither, Ripeness is all,” says Edgar to his father in King Lear. “And that’s true, too,” he responds.