Timing is everything: End-of-life care decisions are as much about the psychological need as the physical one
By: Valerie S. Hartman RN, CTRN
Sarah raised three children alone 50 years ago. She had few reliable support systems for child rearing. One child had special needs, escalating Sarah’s protective instincts during many difficult years before she remarried. At age 76 she remained the parent and primary caregiver to her adult special needs child, and she had no plans to use institutional care.
Sarah became seriously ill and signed onto hospice services after exhausting all options for a curative treatment. She signed onto hospice only when she felt herself weaken, when her ability to take care of her daughter started failing.
The hospice social worker spent time discussing plans for her daughter’s future care. Social work and pastoral care visits opened doors to conversations that explored the meaning of their relationship. The hospice nurse, physical therapist, complementary therapist, and physician worked closely with Sarah to plan care that maintained her function and strength, mental clarity for as long as possible. Sarah wanted normalcy and time. She wanted to die knowing that her special needs daughter was prepared and her future secure.
In conversations with the hospice aide, she would confide that no matter how weak or painful she felt each morning, she did not ever want to leave her daughter. Although she moved with difficulty during her assisted bath, in her decline she refused stronger pain medication for relief. She grieved. Light massage and reflexology helped her find comfort; non-narcotic pain medications lessened her pain. She feared losing mental clarity and speeding up her death if she started using the morphine that was suggested, even though the notion is a myth.
When the right day, the right time, and the right conclusion of events happened to secure her fears about her daughter, she agreed to a dose of morphine to trial it.
For another month she woke more peaceful, moved with ease, and was comfortable receiving stronger pain medication. Her days had quality.
In hospice, treating the physical effects of fear is as important as treating physical symptoms of disease.
The skill of the hospice team is designed around this one true fact: peaceful dying happens when physical symptoms and fears are managed equally.
Sarah’s example shows us that her fear of dying before securing her daughter’s future was driving all of her decisions for her own physical care, a few examples:
- Pursuing aggressive curative treatment, waiting to sign onto hospice service
- Choosing non-medication therapies for symptom relief and maintaining independence for as long as possible
- Requesting frequent visitations with social work
- Living with more pain as she declined to preserve mental clarity
The hospice team has a lot of treatment options to pick and choose from including medications, equipment, in-patient services and access to the professional skills of:
- Pastoral care
- Social work
- Volunteer support
- Complementary / alternative therapists (some programs)
- Wound care specialists
- Allied therapists: Physical, occupational, speech therapy
- Hospice aides
- Nurse, physician, nurse practitioner, and pharmacist support
- Child life specialists (some programs)
- 24-hour on-call triage staff
- Bereavement services
Options are important, and pacing the use of these many treatments and services with each individual in mind is what managing end of life symptoms is really all about.
Since fear causes physical symptoms related to stress, consider that symptoms can be reduced by regular visitation from the social worker, pastoral care provider, complementary therapist, volunteer, allied therapist, or even a talk with a bereavement counselor before those services are needed.
…and timing is everything. If you do not feel as if you need to talk with a social worker, or to start using hospice aide, or to change to a stronger medication today, stay open to options going forward.