I knock on Mary’s door with no more than a name on a chart. My hospice badge prompts her husband to let me inside. Tom apologizes for the disarray as we walk to the family room, where Mary greets me from a recliner chair.
I hear some rustling in the hall and soon meet Mary’s mother, who is entertaining 4-year-old Jimmy while his sisters are at school. Mabel and Mary resemble each other, with their curly brown hair and soft smiles. But today, Mabel could pass for the younger woman.
I sit close to Mary. She talks about her family with a certain pride as they go back to their work. But concern bordering on fear washes across Mary’s face once we are alone. “Nothing is working anymore. The doctor says I cannot tolerate more chemo. Tom has been wonderful, toting me to treatments and appointments—we’re on this road together. But he’s so tired. He’s missed so much work. It was hard to call hospice—nothing against you—but it was a turning point, you know.” Tom joins us again and holds Mary’s thin hand while we talk.
Yes, I do know. After 19 years as a hospice nurse, I know what this first visit means. It is my job—my privilege—to be present with people like Mary and her family as they step away from disease-fighting to peace-seeking. Gradually, care will become more important than cure.
I enter as a stranger, carrying only a name. I have to earn their trust.
Not all first meetings go smoothly. Fear of death or anger at a life-robbing disease sometimes gets directed at me or one of the other hospice team members.
Or sometimes people who have felt controlled by their disease or treatment regimen are hesitant about taking charge of their care. Some believe hospice will hasten death. Some worry that inviting us in constitutes failure or means they have lost the fight. Loyal friends and family, who have prayed for healing, question God’s silence. Everyone walks on new ground that feels mushy, not solid. We know, but have to learn again, that healing is more than physical—that God’s work is mysterious.
Each of us faces death in his or her own way. The hypothetical becomes real: “If you had only months to live . . .”
Hospice workers notice patterns in people facing the end of life: present moments become more valuable, relationships take on new importance, resolution of unfinished business grows urgent. Psychologist Abraham Maslow put it this way in the book The Journals of A.H. Maslow:
Everything gets doubly precious, gets piercingly important. You get stabbed by things, by ?owers and by babies and by beautiful things—just the very act of living, of walking and breathing and eating and having friends and chatting. Everything seems to look more beautiful rather than less, and one gets the much intensi?ed sense of miracles.
This heightened awareness often prompts patients to give of themselves. “What tasks or goals would you like to accomplish before the end of your life?” asks the social worker. Hospice patients grab the precious gift of time to review their lives—renewing bonds and mending fences. People they love join to remember and record what is dear. They can free their loved ones from worry over their well-being.
Tom and Mary make plans for their children; they say things now that used to go unsaid; they cherish their togetherness. Family members, friends, and hospice volunteers find ways to grant last wishes.
Dr. Elizabeth Kubler-Ross’s remarkable book On Death and Dying has helped many of us glimpse death openly through her keen insight into human nature. She notes:
People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.
I’ve witnessed many such inner lights.
One of my clients played the violin. Joni wanted to play in two concerts a distance from her home even though her breathing was compromised. I expressed concern about her safety.
“If I played the trumpet, this might not work, but I’m sure I can make it,” she quipped. The violin had been her life; so she performed in those last concerts before retiring her precious instrument.
Ed, a widower, called hospice after weeks of nausea, unable to keep anything down and too tired to leave the sofa. In collaboration with the team, we tried another medicine and were delighted that he found some relief, which gave him time to accomplish his unfinished goals. He changed the spark plugs in his tractor and walked around his garden, giving his daughter detailed instructions about the care of his precious plants.
“One more thing—I want to go fishing! Not from the dock, but from my boat,” Ed said. Ed’s loyal volunteer drove the boat to a favorite fishing hole, carefully following instructions for Ed’s safety. The two spent a glorious hour drifting and casting. Ed’s wishes came true—and then he assured his family he was ready to go.
Sometimes a hospice worker faces an impossible situation when either the patient or family says, “I don’t want my family to know . . .” or “Don’t tell her. . . .” Everyone pretends they don’t know what they know.
Fear closes the door to healing. A hospice worker can help folks search for the key but cannot force the door open. However, he might ask patient and family, “Can I answer your loved one’s questions openly?” Permission granted, he witnesses pure relief. The key is found and the door opens, just a crack at first but then wide. Everyone becomes free to say what needs to be said. They throw away the key—the door cannot be locked again. Death ceases to be the enemy.
Hospice workers grieve when fear of death keeps their gift of care away until the final hours. The social worker cannot assist the family in making plans; the chaplain cannot help provide spiritual comfort; the nurse can offer only pain control; the health aid, minimal personal care. Time robs many precious goodbyes.
A Final Gift
Norma witnessed to her Christian faith during her illness, which eventually caused her to require artificial feeding. Nausea increased as her body could no longer absorb the fluids. One pain-filled day, her nurse spent a long time with Norma and her husband, talking about their options.
Norma struggled with God’s will in the situation. At the nurse’s suggestion, she tried one day without the feedings and enjoyed her first painless day in months. They knew it was time to stop the feedings, as difficult as that would be. She could tolerate only sips of tea.
Norma’s friends came a few days later, bearing a basket containing a fancy teacup and saucer for each of them. While drinking their “blessing tea,” each friend read a card she had written to express her love and appreciation for Norma. Laughter and tears mingled in their final goodbyes.
Sometimes a dying person is comfortable facing her own end, but a family member is not. Guilt, alienation, or fear of loss can cause people to demand futile treatment despite a patient’s wishes. The situation becomes even more complicated when the patient is no longer able to participate in decisions.
“A Christian Perspective on Death and Dying,” as taught in many churches by the late sociologist Ted Rottman, urged us to speak frankly about death, not at times of crisis but as part of healthy death education. If a family has talked openly about death, arguments at the bedside are less likely when death approaches.
For example, on the occasion of a family reunion celebrating her 80th birthday, Gloria insisted that her four children and their spouses talk seriously about her death. Some wondered why Mom, hale and hearty as ever, would spoil her party with death-talk. But Gloria, widowed 10 years earlier, told everyone her wishes: “No heroics to keep me alive.”
Twelve years later, when Gloria refused invasive testing for a recurring illness, she declared that God was calling her home. She entered hospice and the family gathered to say their farewells. Her wishes were clear—no one could object. Gloria left her family in peace.
Death education often includes writing a “living will” or medical directive. If a family cannot meet to talk about death, as Gloria’s did, perhaps because of distance or estrangement, a written document could pave the way for understanding a person’s end-of-life wishes.
The living will, which designates one or more individuals to act as agent(s) for the person who is dying, could be circulated among the family with a request for a signature of agreement from each member. Once signed by all, a copy can be returned to each as a permanent record.
The living will can also become a testimony of faith. In 1 Peter, the apostle urges, “Even if you should suffer . . . always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have” (3:14-15). Consider one man’s reason for hope, explained in his living will:
As a Christian, I believe not only that we are the Lord’s both in living and in dying (Rom. 14:8) but also that through the power of Christ’s resurrection, death is swallowed up in victory (1 Cor. 15:54). Just as biological death is certain, so is the faithfulness of God in death as in life. As one who believes that Jesus Christ has overcome the ultimate state of death for his followers (alienation from God and from each other) by his participation in the physical event of death on the cross, I wish to be responsible in dying as well as in living, being comforted by the fact that death does not annul my life, but translates it from history to eternity with God.
Hope transcends death. Comfort for the dying one, who is already at peace within his faith, can be found by the family through palliative and hospice care. This loving parting gift serves well to create an atmosphere for final goodbyes.
The bookends of a life are birth and death. We have months to prepare for a birth: decorating a room, making plans, anticipating a blessing. Perhaps we can think of the gestation of death and make preparations as well, expressing love and anticipating abundant blessings. After all, God has already prepared a glorious home for each of us.
When to call hospice
If someone you love has a terminal illness, call your local hospice when
- your loved one’s treatment is not working or it is making him/her feel worse.
- your loved one can no longer take care of daily needs without help.
- your loved one is losing weight unintentionally.
- your loved one is uncomfortable or in pain most of the time.
- visits to the hospital or doctor’s office with your loved one are more frequent, and they do not help.
Who can call hospice?
The doctor, family members, or anyone from the community can call hospice. Hospice can come to you to answer your questions and walk beside you on this journey.
- What would your priorities be if you had a terminal illness?
- What gifts does hospice offer the dying person and his or her family?
- What has to happen in order for death not to be the enemy?
- How can you talk to your family about your wishes while you are still healthy? What are the benefits of that?
- What gift would you like to leave behind when you die?