How palliative care helps the critically ill
November 30, 2018
- Palliative care offers support to patients with serious illnesses.
- Hospice care is a subset of palliative care, aimed at patients in their last months of life.
- Palliative care provides a variety of services, including the opportunity for patients to talk about their wishes for care.
Serious illness brings serious complications. Procedures, medications, therapy, advance directives, caregiving decisions and all the big and small changes to everyday life—they can be overwhelming. That’s why palliative care is so important. Kashina Groves, an advanced registered nurse practitioner at the Swedish Palliative Care and Symptom Management Clinic in Seattle, explains what you should know about it.
What is palliative care?
“Palliative care is a medical specialty focused on quality of life for patients diagnosed with a serious or potentially life-limiting illness. We commonly see patients who have cancer, dementia and other progressive neurological illnesses, heart disease, COPD and advanced liver disease. Palliative care provides support in the domains of physical and mental health symptom management, as well as emotional support. We have conversations that assess and address people’s goals and values as they relate to their medical care.”
How does palliative care differ from hospice care?
“In the United States, hospice refers to a particular type of program that provides support for people who have a terminal illness and are estimated to be in the last six months of life and who are not pursuing any life-prolonging or disease-modifying treatment. Also, hospice is a service that involves home visits by a nurse and medical management through the hospice organization. Palliative care is any kind of care that is meant to make people feel better and maximize quality of life, so hospice is a small subset of the range of palliative care that is offered to people.”
How do you work with patients?
“One intervention we use for all patients is time—we have more time than most other medical specialists have to spend with patients. We are able to get to know them and get to know what is important to them in a deep way. We do that during patient visits to our clinic. We provide supportive listening, and sometimes the visits include medical management of symptoms and referrals to community resources and other medical providers. Depending on what the referring provider has asked us to do, we can co-manage medication and other therapies. We also help people plan for the future in terms of what can happen as a serious illness progresses. We help educate people about what hospice is and when it might be appropriate for them. We help them plan their life in other ways for a time when their illness progresses, such as talking about whether their housing situation will be appropriate for them or whether they will need help finding caregiver support or adaptive equipment. We also talk about advance care planning, living wills and their wishes for their care. We provide a lot of different services depending on the needs of the patient.”
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How long do patients need palliative care?
“Most patients don’t need our services for a prolonged time. Perhaps they are just seeing us a few times to have a discussion about goals or make treatment choices. Sometimes we see people for symptom management on an ongoing basis, except that people with chronic, non-cancer pain may be treated at Swedish Pain Services.”
Are family members involved in palliative care?
“Patients need to come to every visit at the clinic, but we welcome family members and prefer that they come with the patient. We provide a lot of support to the family, especially the primary caregiver. We help with family dynamics as they relate to the illness. If the patient tells me what they want, but they’ve never told anyone else before, it’s less likely that their wishes will be honored.”
What health providers are part of the palliative care team?
“At Swedish, our team includes medical doctors, nurse practitioners, a registered nurse and a social worker. Our inpatient palliative care teams have chaplains. Inpatient hospital visits are also arranged by referral.”
How can a patient access palliative care at Swedish?
“Our clinic is open via provider referrals. Sometimes if a physician wants to refer patients to us just to get recommendations, we can do a consult in that manner. Palliative care doesn’t replace care providers—we are an extra layer of support and become part of the patient’s medical team.”
What’s the best time to pursue palliative care?
“If a patient with a serious illness feels like no one’s been asking what is important to them, and they think it would be helpful for the medical team to know more about their values and goals, that’s a good time to come to the palliative care team. I send a synopsis of our conversation to their doctor, and we will often follow up with a phone call or email. Our communication with the referring provider is tailored to the provider and patient needs, and I coach the patient on how to talk to the doctor. I often provide people with a list of questions we came up with during our visit to ask the doctor; I tell patients that it carries more weight with the doctor if it comes from them. We do not make changes in the patient’s plan of care on our own without collaborating with the attending provider.”
What do patients say they find valuable about palliative care?
“Patients often tell us things like, ‘No one’s ever asked this before,’ or ‘I’ve never had a chance to talk about these things before,’ and a lot of times it’s just basic information about what makes that person tick. The value also comes from giving the referring provider the chance to focus on treating the patient’s illness and know that a second caregiver has come in who also listens to the patient and sees them as a whole person in the same way the referring provider does.”
If you are older than 18, you should have advance directives, including a durable power of attorney for medical care and a living will, to ensure your wishes will be honored. You can access those forms, which are available in several languages, here. The Swedish Palliative Care & Symptom Management Clinic has an outpatient location in First Hill and inpatient teams at First Hill and Cherry Hill, with planned expansion to Edmonds for both inpatient and outpatient care.
Learn more about palliative care at Swedish:
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This information is not intended as a substitute for professional medical care. Always follow your health care professional's instructions.