Lawrence, Mass. – Author Eleanor Gustafson has explored the theme of death in all of her six books and assorted short stories, with some characters coping with its meaning and consequences better than others. Now that the Haverhill resident is facing metastatic lung cancer, she is sharing her personal journey toward end of life in the blog on her website while receiving palliative care from Tufts Medicine Care at Home.
In a recent post titled “She Died Laughing,” for example, Gustafson shares examples from her humor folder while writing, “My oncologist tells me it’s time to get serious about the prospect of dying, and I’m taking his advice. I decided long ago that wringing my hands won’t help, nor would clinging to the bedposts in abject fear, as Scrooge did.”
Yet when confronting end of life issues, many patients, families and even healthcare providers confuse palliative care and hospice as one and the same – though there are key differences between the medical specialties.
Any patient who is diagnosed with a complex, serious medical illness may be referred to palliative care – regardless of their age or stage of illness – for support in relieving the stress and symptoms associated with serious illness. On the other hand, hospice aims to manage pain and other physical, psychosocial and spiritual issues in patients within the last six months of life (as defined and limited by Medicare), or who have chosen not to pursue curative treatment for an advanced illness.
Gustafson, whose oncologist referred her to palliative care, has met with palliative care nurse practitioner Liz Keane, NP for medical assessments, therapeutic interventions and advanced care planning congruent with her values and goals of care.
“I’m undergoing treatment that has kept me alive – but it’s not going to last. And once the medication stops working, everything could go downhill very fast,” said Gustafson. “At first, I only vaguely understood palliative care, so Liz has been very helpful. I appreciate her calls and visits, and just to know she cares. She’s always available as an advisor and to help me as things deteriorate.”
Care at Home provides a full continuum of clinical and supportive services for palliative, home health and hospice care patients wherever they call home – whether at their private residence or within community settings such as a long-term care facility, assisted living residence or High Pointe House, the palliative care and hospice residence located in Haverhill. In addition to visiting patients in more than 110 communities throughout the Merrimack Valley, northeastern Massachusetts and southern New Hampshire, inpatient palliative care consultations take place at MelroseWakefield Hospital, Lowell General Hospital and Tufts Medical Center.
As a member agency of the Center to Advance Palliative Care and the National Hospice and Palliative Care Organization, Care at Home maintains clinical expertise and keeps apprised of trends and developments in the realm of serious illness management. Its multidisciplinary team of palliative care physicians and nurse practitioners, nurses, therapists, aides, clinical social workers, pastoral counselors, dieticians and other caregivers collaborates closely to relieve suffering and improve quality of life.
This team structure not only offers a holistic approach to serious illness, but also ensures timely response to requests for palliative care services which can help decrease lengths of hospitalization and subsequent readmissions, determine safe and appropriate post-acute care planning and ease transitions to end of life when appropriate. In addition, inter-hospital palliative care consultation services link diverse departments and services for effective and efficient use of hospital resources, resulting in higher quality and well-planned treatment.
Yet according to Bernice Burkarth, MD, HMDC, FAAHPM, chief medical officer at Care at Home, increased awareness is still needed so patients and families are less apt to resist palliative care treatment due to misunderstanding. For that reason, an important component of palliative care is skilled intervention with patients and their loved ones to better communicate the nature of the illness, clarify goals and make timely, informed decisions regarding patient care.
“Palliative care is often confused with giving up, when in fact, it respects and honors the patient’s wants and decisions about their own care,” said Dr. Burkarth, a fellow of the American Academy of Hospice and Palliative Medicine. “This approach of focusing on the patient’s right to autonomy results in an improved patient and family experience, which is vital to easing an unimaginably difficult time.”
For example, Gustafson has shared her desire to spend quality time with her husband of 67 years, Rev. James Gustafson, and their three children. She wants to continue welcoming newcomers to West Congregational Church in Haverhill, where James is the organist and a former pastor. Gustafson is also looking forward to celebrating her 89th birthday on February 8, 2023.
“No one wants to think about death, never mind talk about it, but it’s not just me that’s dying. The death rate is 100 percent,” said Gustafson, noting that she does not fear death due to her strong faith. “Death is just one more part of life, and so many others have to walk this same path – or even a more difficult one. My main desire is to communicate that death does not need to be a terrible thing.”
Although every individual’s journey toward end of life is unique, Keane said it is important that her patients know they’re “not out there on their own” in achieving their specific goals of care.
“That might mean to be pain-free. To be able to eat. To become strong enough to get to doctor appointments, or to enjoy another Christmas. For others, it’s helping their family accept when the time comes to shift to hospice,” said Keane, noting that a brick in the Tribute Walkway at High Pointe House is dedicated to her own father, Robert Keane, a chaplain at Merrimack Valley Hospice (now Care at Home) who succumbed to lung cancer while receiving hospice care at home. “In every situation, it’s heartwarming to see people taking care of one another and walking through these hard days side by side.”
Gustafson is appreciative during each moment that she and her loved ones do just that. Every night before bed, for example, her husband continues his longstanding tradition of reading aloud to her – most recently, from one of the books she wrote.
“We all have to face life and death matters at some point,” said Gustafson, who is comforted by memories of the “very caring and supportive” nature of High Pointe House which she experienced while visiting hospice patients – and may someday require herself. “The sooner we think and talk about these issues, the better off we are.”
To learn more about palliative care, visit www.careathome.org/palliative.
About Tufts Medicine Care at Home
Tufts Medicine Care at Home, part of the Tufts Medicine health system, provides a full continuum of palliative, home health and hospice care in home and community settings. Our highly skilled healthcare providers are renowned for their expertise in a wide range of cutting-edge clinical and supportive services for infants, children, adults and elders. The nonprofit organization delivers expert, compassionate care in more than 100 communities throughout the Merrimack Valley, northeastern Massachusetts and southern New Hampshire.