Once upon a time in America, people lived in community. Kids went outside to personally interact with other kids, and could run the length of the neighborhood through unfenced back yards. Had there been an express lane at the grocery, no one would have used it. It would have curtailed their visiting time. People went to a post office for their mail, and conversed with other adults while there.
When calamity struck, like a fire, people left their homes and went to the site. But not to gawk. They were filling buckets with water and passing them. They were setting up food, refreshment and first aid areas. They came back later to repair and rebuild.
Disease was handled quite differently from what we know today. Some ailments sent you away to places for that particular infirmity. Measles, mumps and polio – practically non-existent today – might cause a home to be quarantined. It was sealed, with the family inside, no visitors allowed. A sign on the front door announced it. The community reaction was to drop off items needed and meals, since no one could get out to get them.
Death was also part of daily life. Elder family members were cared for in the home. When they died, the viewing (or wake) was held at home. A black wreath was hung on the front door to let the community know what had happened. A white wreath signified the death of a child. The community responded accordingly to both. Family members wore a strap of black on their upper arms to let people know they were mourning a loss. Co-workers and friends were sympathetic. Children weren’t shielded from any of this. By observing the adults, children learned how the grieving process worked, what could be expected, what death looked like, and what was appropriate. The children helped other children through their grieving processes.
War, modernization, medicine and employment have changed all that. We’ve lost touch with community lessons. We have come to depend on medicine for long term illness. We now sequester the dying to institutions, and have lost the ability to cope with it. Death is an unknown commodity, and we fear it because we can’t control it. In our instant world, we have no patience for natural processes and the time they take. We fight aging and hide from death, reminders of our own mortality.
Thankfully, there is a small army of special people to get us through this scary and unfamiliar terrain. They administer to the dying and their families. Comfort and education are the mainstays in their arsenals. They believe the moment of death to be a holy experience. They mentor families through this amazing time.
This is Hospice.
Two British doctors found that when a dying patient’s pain and symptoms were controlled, they fared much better. They fought for the rights of dying people, including the expectation of acts of comfort and friendship. They felt strongly that a person’s spirituality should be addressed and nourished at this important time, bringing peace. Family was an extremely valuable component, and given as much support as the dying patient. Grief support was included. These physicians believed in death with dignity.
One of these pioneers, Dr. Cicely Saunders, taught at Yale school of medicine about this movement. The first American hospice was founded in Connecticut in 1974 with her help.
Dr. Elisabeth Kubler-Ross wrote extensively about the grief process for the patient and the family. By interviewing scores of dying people, she compiled a compendium of their needs. She stressed the importance of spiritual care. Her books brought death back out in the open.
By 1980 Congress approved Medicare payment for hospice care. By 2000, one in every four dying patients received it. Hospices function in the patient’s home, or in their own facilities.
While the medical community supports this holistic approach, they still have trouble focusing on the death of their patients. Curing is their forte. Hospitals rarely deal with families at all after a patient has died.
Hospice believes “We do not have to cure to heal”. You may still see medications and iv tubes during hospice care. These are comfort measures. The body needs fluids, and lack thereof creates complications. So fluids may be administered. Drugs keep pain and other symptoms at bay. Quality of life is the goal, not prolonging it at any cost.
One myth about hospice is that death is hastened. Absolutely not true. Prolonging life may not be a goal. But letting life take a natural course, with as much comfort and ease as possible, is.
Healing takes many forms. One’s kinship to God is solidified. Relationships have a tendency to heal when parties realize time is short, and what kept them apart is really unimportant in the larger picture. One may come to terms with burdens carried for years. Forgiveness happens. Joy flourishes amidst the grief. Unfinished business is finalized. There is time for farewells, which help the survivors cope later.
If you or a family member are facing death, you probably feel helpless, with no control. The best thing you can do is find a hospice near you and talk to them. Peace, grace, compassion – and yes, control – can be yours. Your fears will vanish. You and your loved ones can heal in ways you never imagined.