The Journey of the Last Days

Death is a physical, emotional and spiritual journey into an unknown realm. Because we can’t see the other side, we fear death and the dying process itself. The approaching death of a loved one is a stressful time for everyone, with mixed emotions, anger, regret, guilt and sadness. Hospice can help both the patient and family work through those emotions without judgment — no matter what they are or how they are expressed — and to understand the physical changes that will begin to take place.

Instead of a time of frantic medical interventions intended to bind a person to life, death can be about release and letting go. Hospice staff, who have been with and seen many people pass away, describe it more often as a beautiful experience that can be filled with peace and love. Family members have an opportunity to say goodbye in their individual way, to acknowledge the place their loved one has held in their lives, and to say thank you. Many patients seem to pass more peacefully when family members assure them that they will be able to carry on.

On the physical plane, the journey of the last days is about the body relinquishing the physical processes that were required to sustain life. Intertwined at the same time that the physical processes begin to shut down, a different journey begins that moves toward another dimension — a dimension unknown and unknowable in our physical world.

This time of transition can be frightening if family members do not know what to expect. But the process is entirely natural and in no way signifies a medical emergency. Hospice staff can help prepare the family for physical changes and explain each step of the way.

The Hospice Presence

The presence of hospice in the final hours of a patient’s life, whether at home, in a hospital or in a nursing facility, depends upon the needs and desires of the patient and family. Some families want support, others wish to be alone, and hospice honors each family’s preference.

Vigil volunteers are sometimes asked by the family to sit at the bedside. “Oftentimes when the patient is close to passing, the family is worn out,” says Terry Skelley, a vigil volunteer for AseraCare Hospice in Pittsburgh, Pa., who sits with critical patients in the mid-to-late evening. “The family has gone the distance with their loved one and they are grateful to have someone sit with them.” Terry plays CDs and sometimes sings along with them. “If the family or patient likes, as an active Catholic, I will say the rosary with them. Sometimes it’s enough just to be there so the patient is not alone. I’ve seen families who have to make awful decisions in terms of their time and energy and work schedules. So to have someone to be with their loved one means a lot to them.”

If the family is present, Terry often asks them to tell their story. “It’s amazing what comes back,” she says. “They want to share their memories of their mom or dad and it helps them to remember some better times in their lives.

Sometimes I’ll say, ‘Why don’t you thank your mom?’ They are so grateful to have that kind of experience.” Sometimes patients seem to be waiting for permission to pass away, for some final emotional step. Hospice can help. Carol Skare, RN, tells the story of Lonnie, a beautiful lady who found it difficult to let go until one simple act seemed to bring release.

“Lonnie’s family was by her side every day, expecting each day to be her last. On one of those days, the staff sat with the family and told them how honored we were to be allowed to be a part of Lonnie’s life. Her family happily told us that they were so grateful for all the care our staff had given Lonnie and were often comforted knowing that Lonnie was not alone. Lonnie had always been very religious, and hospice staff would frequently read to her from her Bible. Her family said they appreciated this because they knew how important this was to Lonnie.

“One day when her youngest son was visiting her, the social worker and home health aide were present. Her son told them how his mom used to be so careful about her appearance and always wore red lipstick and how, since her dementia, she never wore lipstick any more. The aide thought about how Lonnie must feel about her appearance. She dressed Lonnie in a different gown and her nurse painted her lips red. Shortly after applying the lipstick, Lonnie passed away.

“Of course no one can know if wearing red lipstick again brought Lonnie her release. But the hospice staff felt honored to give that gift to Lonnie in her last moments and to be given the gift of learning about her past and her story from her family.”

Prayer and spirituality are seldom addressed by the medical profession. Yet many patients experience a deeper sense of spirituality as death approaches. Spirituality differs from codified religion and may be expressed in many forms. Regardless of a person’s religious denomination, the purpose and meaning of life looms as a large question at the end of life. Addressing spirituality during the final days of a patient’s life, according to the wishes and beliefs of the patient, is an important part of hospice services.

Marie tells the story of Naomi, who was close to death in a nursing home. Her family had not been to visit her, but a staff member at the nursing home had been her adopted family over nearly 20 years, and she was a woman of faith. Naomi needed a pastor to pray for her. “John, our spiritual care coordinator, had seen her the day before and returned,” recalls Marie. “He went to Naomi’s bedside and knelt in front of her, holding her hand. I asked the staff members, including the adopted family member, to come and we all made a prayer circle around her bed. John sang to Naomi and prayed for her. She opened her blue eyes and smiled throughout his prayers. John remained in her presence for an hour that night and came back the next day. Naomi was no longer responsive and she died peacefully and beautifully. She and her loved ones needed prayer and presence before her death.”

Mental, Emotional and Spiritual Process

Death, just as life, is an individual journey, and no two people travel the exact same path. The process of death may vary, but it is important to remember that it is a process, a time of preparation for entering the next world. Not everyone prepares for the end of life in the same way, but there are certain steps that many seem to have in common. The timing is individual; it involves how a person lived, his or her inner life, and an awareness of mortality.

The journey begins with your loved one’s withdrawal from the world and a sense of separation from those who have been so much a part of life. This separation is an important preparation for the patient in saying goodbye. Family members should not take any withdrawal as a personal rejection or consider it any reflection that they are not important or loved. Your loved one is simply changing focus from being involved in life to an inner center of attention. In the search for meaning, visits from friends and family may be less important. The patient may need quiet time to think through how he or she lived, review memories and sort through regrets. It is natural for your loved one to sleep more and lose interest in conversation.

This might be a time of disorientation. Vivid dreams, hallucinations and visions are sometimes part of the personal work that needs to be accomplished before the body is ready to let go. Physical restlessness, pulling at the bedclothes, calling out the names of those who have gone before, or even attempting to get out of bed — all this is normal. Although your loved one’s confusion and agitation may distress family members, remember that they are not personal; they are part of the process and may even be helping your loved one move on.

During this time, caregivers can do little other than to be there for their loved ones. Reassure them, hold their hand. Instead of trying to “make sense,” open yourself to their reality and let them know you love them. Most of all, give them permission to let go.

Physical Changes

The physical body has its own way of slowing and shutting down. This can be frightening when seen for the first time. But it is entirely normal. None of the physical changes mean your loved one is suffering. The hospice staff can guide families as to what to expect. As metabolism alters, food becomes less appealing. Hunger and thirst decrease and eventually disappear. The body no longer needs to maintain itself — it is on a different journey.

“One thing I see families struggle with the most is that their loved one’s appetite diminishes,” says Peggy Durkin, regional vice president of hospice services for AseraCare. “We want to feed the people we love. But when someone is dying, their body doesn’t need or want that food. Families feel so frustrated because they can’t comfort their loved one with his or her favorite meal. We help them understand this is a normal process for the body. It’s not that the person doesn’t want to eat or appreciate what their loved one is trying to do, but sometimes they can’t eat. We help the family find other ways to express their love.”

Changes in vision and speech are common at this time. Your loved one may close his or her eyes due to sensitivity to light and difficulty focusing. Words are the hallmark of the physical world, and communication now may be reduced to a squeezed hand or a smile. Let the hospice nurse know if you notice any signs of pain, such as a grimace or furrowed brow.

Incontinence, decreased blood pressure and irregular pulse are all signs that the physical body is shutting down. As circulation diminishes, skin may be hot or cold and color alters. Lips, nails, hands and feet may take on a bluish cast. There may be respiratory congestion and pauses in breathing. Your loved one may make a rattling sound or moan. This does not signal pain or distress; it is simply air passing over the relaxed vocal cords.

Hearing may be the last sense to go, so through these changes, talking quietly and lovingly may bring great comfort to your loved one. Avoid loud noises or any effort to “revive” your loved one from the process. Passing from life is a sacred time. Each person will choose the moment of his or her death. When surrounded by forgiveness and love, letting go of life can be a profound and peaceful transition into a dimension only the traveler will know.

Tips on How to Help Your Loved One Let Go

  • Now is the time to give your loved one your full acceptance and support without judgment. Giving permission for the person to let go is the greatest gift you can give.
  • Eating and drinking are no longer necessary. Don’t force food or make your loved one feel guilty about rejecting food.
  • Hearing is often the last sense to go, so speak directly to your loved one in quiet tones.
  • If your loved one becomes restless, do not try to restrain him or her. A cool cloth to the forehead can be calming.
  • Discuss with the hospice nurse how to keep your loved one clean and comfortable.
  • Congestion and gurgling sounds in the chest are normal and do not signify pain. Gently wipe your loved one’s mouth with a moist cloth.
  • As the skin becomes cool from decreased circulation, have a blanket handy.
  • Now is the time to say goodbye. Tears are a normal part of the process and express your love, so don’t feel you must hide your tears from your loved one.
  • You may want to feel close, so feel free to hold your loved one’s hand or even lie down next to him or her. This is a time of love.
  • The actual signs of death are lack of breath and heartbeat, eyelids lightly open, pupils enlarged, relaxed mouth and jaw.
  • Death is not a medical emergency in hospice. Nothing has to be done immediately. You may stay with your loved one in this sacred space. When you are ready, notify the hospice nurse.