As an experienced nurse of 29 years, I have worked in many settings. I have always felt confident with my nursing interventions and proud of my patients as they advanced and became well enough to be discharged and go home. For the past 9 years, I have worked as a home healthcare nurse. I have found this setting to be the ultimate place to practice my profession. You meet your patient as a guest in his or her home and leave as a family member when he or she is discharged from the agency. Recently, I have had the chance to become familiar with hospice as well.
My husband's mother had been sick for almost a year with reoccurring pneumonia and discomfort. She had several rounds of antibiotics but her symptoms always came back and her discomfort continued to grow. She had lived with pain all her life after being diagnosed with rheumatoid arthritis (RA). She fought her RA with medication and multiple surgeries to repair the tortured joints of her body, but she said this was not arthritic pain and wanted answers.
Her primary care provider ordered a computed tomography (CT) scan of the chest to assess the reason for her pain and it had some concerning areas. The results of the scan prompted a referral to an oncologist at the local medical center. The oncologist recommended she be admitted to the hospital for a scheduled thorascopy. Everything seemed to be moving rapidly and silently I was praying for anything except what I was anticipating.
Later that evening, the physician came to the room to discuss the results of the thorascopy. He said "it's Stage IV lung cancer, non-small cell carcinoma." It felt as if the whole room had become an airplane that had just lost its cabin pressure. The air was punched from our lungs. The silence seemed to hang in the air like a dense fog until she said "that's what I thought it was." He went on to tell her it was inoperable and would refer her to a local oncologist for follow-up. He had said typically 50% of patients with this diagnosis would not survive more than a year without treatment.
She was a fighter and had fought all her life as she dealt with the pain associated with her RA, and so we anticipated the battle ahead. The next 2 weeks were a period of waiting. A positron emission tomography (PET) scan had to be scheduled and then rescheduled due to a scanner malfunction. In frustration, she said "I don't need the scan, I can tell you where the cancer is without the scan." The days passed slowly as we awaited the PET scan results. But as God always graces us with what we need, He gave her time to talk with her family and visit her friends. She had a strong faith in God and had an anxious anticipation for what would follow after death. No more pain, no more sorrow. Finally, the appointment with the oncologist came to review the PET scan. He confirmed her suspicions, telling her the cancer was not only in her lungs but had metastasized to her cervical and thoracic spine, her hips, ribs, and sternum. The oncologist recommended hospice for comfort, and she chose not to pursue radiation or chemotherapy.
The hospice nurse met us on the next Monday. I felt empathy for her-she admitted not only her patient but the family also-as nine of us were gathered around the dining-room table for the admission process. She was kind and helpful as she described the process of hospice and became familiar with her patient. I personally felt some apprehension as my whole life I had intervened to promote healing and life. Now there would be no interventions, there would be no life-saving measures. She told her family and the nurse she was in terrible pain and had been for some time. She told jokes to lighten the somber mood of the family as she was honest about her pain. She had fought the good fight and had lived a long, often, hard life. My mother-in-law was at ease and the ready to go but knew her family was not yet prepared.
As a nurse I had studied the Kubler-Ross (1969) book, On Death and Dying. She listed the five stages of death and dying and outlined them as denial, anger, bargaining, depression, and acceptance. Kubler-Ross said not all stages are experienced by everyone, and these stages are not chronological. She describes that people may move from one stage to another depending on the circumstances almost in a "roller coaster"-type fashion. The reactions are unique to each person who experiences a terminal illness or a traumatic event (Kubler-Ross, 1969).
My mother-in-law wanted her family gathered around her, touching her with loving hands at the end. She had a blanket of love that all her family and friends had signed as they visited, laughed, and cried over the past few weeks. That blanket covered her while she slept.
She had always been a strong woman in life even with her independence cut short because of her RA, and she continued to be strong with a new goal, which was to have a good death.
Having studied the stages of grief, I watched them unfold for not only her but for the family as well.
As a home healthcare nurse, I came to realize that I still had some important interventions. They were different, but just as important as the "medical" model of care. The touch of a hand, an embrace, and the quiet presence of support were all needed. The family members had to verbalize their feelings and work to accept her desires for a pain-free death. It was important to enjoy periods of time when conversations were able to take place and her loved ones were able to communicate that it was "okay" for her to pass on. The family was sad with its anticipated loss, but so excited for her to pass into a world that was pain-free.
She passed away with her family at her side and covered by her blanket of love. She is missed on this earth but as she said numerous times, she will see us on the other side. We were very thankful for the knowledgeable, professional, and kind hospice nurses, volunteers, and ancillary staff who helped us through the process of her death. We could not have done it without them. We consider them angels on earth.
New Family Caregiver Guide and Checklist on Planned Surgery
Many older adults have planned surgery, such as hip or knee replacements, gall bladder removal, or heart bypass. Surgery can improve function and quality of life, but it also entails risks. Anesthesia risks are well known, but older adults also have longer recovery times and may be vulnerable to adverse drug reactions. "A Family Caregiver's Guide to Surgery for Older Adults" suggests what to ask the surgeon about treatment goals, pain, and physical limitations after surgery, as well as costs and postdischarge options. It also includes a checklist, adapted for family caregivers, from the American College of Surgeons and the American Geriatric Society to assess older patients before surgery. This checklist asks questions about the person's cognitive status, history of falls, nutritional status, and other elements that may affect the surgery and its outcome.
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