Some time ago, my father was diagnosed with lung cancer. At 87, he decided to let nature take its course and focus on the quality of his remaining months. He designated my older brother as his “health care proxy” to make medical decisions when he was unable to. He also drew up “advanced directives” to guide my brother and me in caring for him while he came to the natural end of his life. He wanted only “palliative care” or comfort care as his disease progressed — he did not want any life-sustaining interventions.
My brother and I supported his decision, and when the time came, we honored his wishes. Despite the clarity of his directives, there were times that we had to remind hospital physicians (mostly doctors in training) that he did not want any treatment. During the year of his decline, the palliative care team of Sloan Kettering Cancer Hospital in New York provided home care for him, and he had a decent quality of life up until several weeks before he passed away.
Despite our preparation, there were times during his last days when my brother and I were confused. Was treating a possible urinary tract infection part of his advanced directive? How much pain medicine was too much? Was he comfortable when he was disoriented? These final days can be very confusing for family members, even when prepared.
Patients and family members deal with many unknowns, including not only the disease process but also the dying process. The wishes of the ill family member can change over time. It’s important to make sure you know your loved one’s preferences for end-of-life care during this time.
Most Americans come to the end of their lives in an institution such as a hospital or nursing home, but given the choice, they would prefer to die at home. Because our medical system is designed to treat patients, many adults who are dying receive treatment that is no longer effective without ever knowing that they are coming to the natural end of their lives.
My mom passed away in her home, surrounded by loved ones, after receiving comfort care from hospice. She was peaceful and calm during the three months she received home care.
Interestingly, we know from good studies that people who receive hospice care at home live longer than those who go in and out of the hospital during their final months. They also experience less pain and a better quality of life, and their loved ones experience shorter periods of sadness and grief after death.
Many families describe the hospice care they receive as wonderful. The hospice professionals work to make the patient and family comfortable.
Here are some valuable suggestions.
• Find out what your ill or older adult family member wants. Many times, adult children are uncomfortable bringing up this topic. Most older adults are comfortable discussing their death, but they may feel that their children are not. Find out what they want and be their advocate.
• Make sure they have a “designated power of attorney for health care” and an “advanced directive.” In Washington state, a document called a POLST (Physician Orders for Life-Sustaining Treatment) clarifies the patient’s desires regarding aggressive measures such as intubation, cardiac resuscitation, and artificial tube feedings. It’s essential to have a designated healthcare proxy to make decisions when your dying family member cannot.
• Discuss these issues with your doctor. When patients discuss end-of-life issues with their physician, they are far more likely to receive many of the services, such as hospice and home care, that can improve the quality of their end-of-life. It is perfectly okay to make an appointment with your physician only to discuss end-of-life wishes.
Paul Schoenfeld is a clinical psychologist at The Everett Clinic. For more information, visit www.everettclinic.com.
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