My father passed away with metastatic prostate cancer on March 16th. He was living in my house for the last four months of his life so that we could assist my mother in caring for him. We were fortunate to have Hospice guiding us along the difficult and foreign path toward death.
He had a series of complications toward the end. He had a colostomy as well as two nephrostomy tubes. Most of the work for the colostomy could be done at home but the nephrostomy tubes had to be surgically re-inserted periodically. On his last visit for the procedure, two weeks before he died, my dad looked at the nurse as she was preparing him and said, “You won’t keep me here, will you?” Even though it took three of us to get him out of his bed at home and into the car via a wheelchair, my dad did not want to be in the hospital and preferred the physical strain it cost him to return home.
Knowing what I know now about dying — and dying from cancer, I can still say that dying at home, without the fuss of hospital policies/standards/protocols etc. provided a more comfortable and private place for my dad and my family. For us, the ultimate patient experience was a quiet and private passing. Hospice nurses and aides took great care to make sure my father was comfortable, clean, with limited pain and in good care. They took extra steps to help my mother and me know what to expect and what we could do to help my father. They stepped out when our questioning was done but stood ready to help, steward and comfort us.
According to the Journal of Clinical Oncology as reported by Reuters (September 13, 2010), at-home hospice care saves money, reduces emotional distress for caregivers and leads to a more peaceful end-of-life passing. While most cancer patients indicate they would prefer to die at home, more than 36% will die in an acute care setting. Over 25% of Medicare expenditures are spent in the final month of life, most often in intensive care even though there is limited evidence of benefit for the patient.
Physicians and healthcare organizations can help patients and their families in this final quest for a positive patient experience by providing more conversation around the planning for the end of life.
Research conducted by the Agency for Healthcare Research and Quality (AHRQ) indicates the following:
- Less than 50 percent of the severely or terminally ill patients surveyed had an advance directive in their medical record.
- Only 12 percent of patients with an advance directive had received input from their physician in its development
- At least 2/3 of physicians surveyed whose patients had an advance directive were not aware that it existed.
- Care at the end of life sometimes appears to be inconsistent with patient preferences of forgoing life-sustaining treatment.
As health care professionals and as family members, let’s not leave out the important conversation about end-of-life issues. Talk it over, ask questions, review with each other and make sure that when the time comes, you AND your loved ones understand what is important. Knowing that my dad died in the manner he hoped makes his absence more tolerable.
Tags: patient experience