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Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org.
Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts. In this entry, we cover what caregivers should know about palliative care with Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.
Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007.
Caregiving MetroWest: What is palliative care?
Judith Boyko: Palliative care aims to ease the pain of people receiving curative treatments for serious, chronic or terminal illnesses. It aims to assess and address patients’ pain as well as meet physical, emotional and spiritual needs. The goal of palliative care is to help patients maintain the best possible quality of life while providing relief from pain throughout the course of their illness.
CGMW: What is the difference between palliative care and hospice care?
JB: While both disciplines aim to relieve pain and provide care for the patient, palliative care can be delivered to those who are receiving curative treatments for their condition. Patients receiving palliative care may also undergo clinical trials at the same time.
Hospice, on the other hand, is delivered to patients who have been given a diagnosis of six months or less to live and who are not receiving treatments for their diseases. The goal of hospice is to help prepare the patient and the patient’s family for end-of-life and aims to provide comfort and dignity at the end of life.
CGMW: When is it time to consider palliative care?
JB: Palliative care can begin at the initial diagnosis and start of treatment, but for those who choose to receive it, palliative care can begin at any stage of an illness.
Medical treatments like chemotherapy and radiation present symptoms like shortness of breath, fatigue, constipation, nausea, loss of appetite or difficulty swallowing or sleeping. Palliative care improves the patients’ ability to tolerate those medical treatments.
CGMW: Who provides palliative care? Who makes up the palliative care team?
JB: The palliative care team is an interdisciplinary team that could consist of nurses; rehabilitation therapists – physical, occupational and speech; social workers; home health aides; a licensed dietician; the patient’s primary or specialty care physician for consultations; and a member of the clergy, if the patient or the patient’s family requests it.
The team approaches the patient from a “holistic” standpoint in that it creates and implements a plan of care based not only on a patient’s diagnosis but also on the challenges with which he/she may be struggling – from anxiety about the difficulty of caring for young children while ill, to a family caregiver`s stress or depression.
CGMW: Does the caregiver benefit from palliative care, and what’s the caregiver’s role in palliative care?
JB: First and foremost, caregivers are supported by counseling to address their caregiver strain and stress. They are provided with supportive services like talking with a social worker and helping a loved one plan a course of care. They are also provided with resources to utilize when they need to.
Caregivers can also benefit from palliative care when it comes to their own well-being and issues surrounding their emotional state in terms of bereavement. The palliative care social worker can discuss with a caregiver issues like grief, the dying process, end-of-life planning, stress and depression. Additionally, a social worker who is trained in bereavement can even make visits to the caregiver and the family after their loved one has died and can help them adjust to their loss.
Palliative care is delivered based on a patient’s personal beliefs, goals and values, and caregivers can help guide the team on what those are.
On its website, the National Cancer Institute says that caregivers often become overwhelmed at the myriad responsibilities they have in caring for a loved one while managing their other responsibilities, “such as work and caring for other family members. Other issues can add to the stress, including uncertainty about how to help their loved one with medical situations, inadequate social support, and emotions such as worry and fear. These challenges can compromise their own health. Palliative care can help families and friends cope with these issues and give them the support they need.”
CGMW: Can palliative care be used in conjunction with other treatments?
JB: Yes. Palliative care goes beyond symptom relief for chemotherapy and radiation. Palliative care can be delivered to patients who are also receiving curative treatments for conditions like MS, ALS, cancer, end-stage congestive heart failure or end-stage chronic obstructive pulmonary disorder (COPD). Not only does palliative care improve the quality of life for patients with these conditions, but it may even extend their lives.
In fact, according to Center to Advance Palliative Care, a 2010 study in the New England Journal of Medicine said that “patients receiving early palliative care experienced less depression, improved quality of life and survived 2.7 months longer.”
Mass Medical Society’s NEJM Journal Watch, which aims to help “clinicians efficiently understand medical developments to improve patient care,” addressed on its website a Boston hospital study of 151 patients with newly-diagnosed lung cancer. Some of those patients received palliative care, and they “reported significantly better quality of life during their illnesses. The palliative group received less chemotherapy (and) made fewer emergency department visits.”
CGMW: Does Medicare, Medicaid/Mass Health or private insurance pay for palliative care?
JB: Yes. The cost for palliative care is generally covered by all of these carriers. There is not a special benefit for palliative care.
CGMW: Where does palliative care usually take place (at home or in a hospital, nursing home or other facility)?
JB: All of the above. Typically, palliative care is provided in the patient’s home, a hospital, a hospice setting or a long-term facility like an independent or assisted living facility.
CGMW: Where can I find more information about palliative care?
JB: On the Natick VNA website, there is a section called “Caregiver Resources.” Within that section, there are links to several organizations that provide information and education about palliative care, hospice care and end-of-life care. Caregiving MetroWest also has listings of organizations that offer hospice in this area.