Hospice is a family affair

Family in hospice care

Hospice works well when family members support each other and discuss the important practical and emotional decisions concerning end-of-life care.

There are two undeniable, unavoidable natural facts of life. We all are born. We all will die. There is no surprise in either event, yet for many years both were hidden away. Medical professionals made the decisions about life’s beginning and life’s end. Then families reclaimed their right to have childbirth reflect their own wishes and values, and it changed the standards of good obstetrical care.

Back in the 1960s and ’70s, mothers and fathers had some new ideas about childbirth. Moms decided that they didn’t want to welcome a new life into the family all by themselves; it should be a family affair.

Dads decided that they didn’t really want to sit out in a waiting room, worrying about the person they loved most; it should be a family affair. So from the very beginning of the pregnancy, mothers and fathers talked about how they wanted the birth to happen.

Where did they want to be at home, in a birthing center or in a hospital? Who did they want to be with them? What kind of medical treatment did they want to keep mom comfortable?

They talked to the obstetrician about their wishes and got advice on the medical aspects of their plan. They learned all they could about childbirth; they got rid of any fear of the unknown. When the time came for the baby to be born, they were confident that they could handle anything together, and their doctor knew exactly what they wanted. It was going to be a family affair.

Hospice emerges

The late 1970s and ’80s introduced hospice care, which focuses on the other of life’s two expected events. Similar to the evolution of childbirth customs, hospice brought families like yours back into the picture.

You and your family are probably facing some challenging health care decisions. It may be hard for you to talk about death or know what to do next. Perhaps you feel alone and like you are losing control. Maybe you are confused by the information you are getting. Medical interventions happen before you have a chance to understand them, and you are probably worried about money. It is unclear who is in charge — but it certainly doesn’t feel like you are.

Safety net

When we feel overwhelmed, we reach for what we know best and what is most dear to us. Families are our safety nets and sources of strength. It is good to know that hospice care can help you tap into your family’s unique resources for navigating the final voyage of life — much as those childbirth pioneers empowered families years ago.

Family Strengths Model

Hospice programs help family members understand, prepare for and support each other through a final illness. With sound medical advice, hospice helps families make the choices that are right for them. It teaches family members how to confidently give the best care possible. When death comes, hospice continues to care for family members in their grief. Hospice is now the standard for excellent care at life’s end. How do families and hospice programs work together? A Family Strengths Model suggests there are six clusters of qualities exhibited by strong and loving families:

  • Commitment
  • Togetherness
  • Appreciation
  • Good communication
  • Spiritual well-being
  • Coping with crises and stress

These qualities are also part of the hospice concept. Hospice exists to help family members keep their commitments to each other when a loved one is dying. Your commitment could be to keep the patient at home rather than in a hospital or nursing home (although hospice care can happen anywhere); to be at the patient’s side; or even to mend a relationship.

Certainly, one commitment would be to ensure the best of care. Hospice professionals make this possible. Knowledgeable nurses are hands-on clinicians as well as the communication bridge to physicians and other health care providers.

Hospice care depends on your family members coming together, each doing their part. The hospice staff does not “take over;” rather, they teach and support. You and other family members can give amazing care, thanks to the experience shared by hospice nurses.

When this togetherness seems like a tall order under the stress of serious illness, that’s where help with communication comes in. Family meetings, often led by hospice social workers or nurses, can help you all talk about your feelings, cope with the impending death and make the decisions that are right for you.

Hospice workers recognize that no one knows the patient better than you and your family. Hospice appreciates the abilities and skills of each family caregiver and helps you appreciate each other during trying times. Hospice also supports you in saying goodbye to the one who is dying, conveying love and gratitude in your own way.

Religious traditions and personal faith can play an enormous role in a patient’s physical and emotional well-being, as well as your own comfort, as death approaches. Faith often provides a meaningful context to life and to death. Hospice honors the spiritual dimensions of every family. A chaplain is available to meet your family’s spiritual needs or serve as a connection to community clergy of your choice.

In moments of medical crisis, you can be confident that you can reach a hospice nurse 24 hours a day and get a prompt response. When stress mounts, hospice staff and volunteers provide practical assistance and assist you in finding the help you need. Focused support during grieving lasts for many months after the death occurs.

If money concerns increase stress, it is good to know that hospice care is covered by Medicare, Medicaid and virtually all other insurance plans. And if there is no insurance and resources are limited, hospice care is offered on a sliding scale. The most important thing is that your family has the opportunity to care for your loved one according to family wishes, and that he or she lives out those final days in comfort and peace.

Remember that death, like birth, is part of your family’s unique story, and that your values and choices make all the difference. Hospices exist to make it a family affair — your family’s.

By Johanna Turner

Johanna is a retired 35-year hospice professional. Reprinted with permission from the American Hospice Foundation.