You or your loved ones may need palliative care one day, a service specifically for anyone with a life-limiting disease. While the terms “palliative care” and “hospice care” are often used interchangeably, they’re not the same. Palliative care is available to improve the quality of life for patients with any sickness or disease that makes daily life difficult, while hospice care is specifically for patients with a terminal illness who need end-of-life care.

Both palliative and hospice care focus on making the patient comfortable, treating pain, dealing with emotional issues that arise and helping patients manage their daily schedule.

Patients can start palliative care services right after a diagnosis of a life-limiting illness or disease. These services are designed to improve their quality of life and, if possible, allow them more independence.

There are five general stages of palliative care, though individual needs may mean that providers vary from that order. Palliative care can last for years, and receiving palliative care doesn’t mean a prognosis of death is imminent.

A patient can have palliative care up to the time they become terminal or decide to no longer seek aggressive treatment to keep a chronic illness at bay.

Stage 1 Part A: Stable

Palliative care involves experts from different professions rather than just medical care. When a person is diagnosed with a difficult or life-changing illness, palliative care helps with everyday tasks and medications. It puts a holistic treatment plan in place for them and their loved ones. These providers may be involved with a palliative care team:

• Counselor, psychologist or therapist. These individuals help friends and family deal with the natural emotional difficulties that come with handling life-limiting conditions.

• Doctors. The primary care provider will be at the center of your palliative care team, helping to coordinate other healthcare professionals, medications, therapies and psychological support.

• Insurance coverage or financial assistance specialists. These can be hospital social workers, charity organization representatives, or someone from an insurance company or a community assistance program. Because palliative care involves so many different care professionals, it’s a good idea to get advice and assistance about financial and insurance issues.

• Live-in or visiting care. Professional caregivers can offer personal care or general daily assistance. 

• Pharmacist. The person handling medication and ensuring it’s correct and available when you need it is also important. Whether a pharmacist works in a hospital or at a retail pharmacy, they’re an integral part of palliative care.

• Religious or spiritual leader. When receiving palliative care, a religious or spiritual leader may offer comfort and hope at home or the hospital.

• Social worker. A social worker helps find the caregivers needed and can also help through the financial and community support process.

Before your loved one begins palliative care, work together to make a care plan with all involved. An initial meeting with one or more care team members should be scheduled before palliative care begins. Each facet of the patient’s care plan can change as the illness progresses and needs change, but a basic roadmap means everyone can start on the same page.

Stage 1 Part B: Planning for the Unknown

Make a plan not only for care, but also in case the individual can no longer speak or advocate for themself, or if they pass on. Though it’s not pleasant to consider death or getting to a point where communication isn’t possible, making these decisions now in writing will help loved ones later. Consider consulting a lawyer since many of the decisions made will have a legal component to them.

Keep all plans and legal documents in one place, including social security cards, birth certificates, bank information and property details. Only one trusted person or the individual’s lawyer should know where the documents are.

Anyone entering palliative care should also discuss their care and just-in-case plans with their loved ones. Keeping those closest to them informed about their preferences is beneficial for everyone. Consider the following:

• Advance directive. An advance directive is a document that clearly outlines wishes for care when you’re unable to communicate your desires.

• Financial power of attorney. The individual should designate a trusted person to take care of finances if they aren’table. A financial power of attorney will allow finances to be managed while the patient is living and expires at death. A legal will is a good idea to determine who will handle the distribution of wealth if the individual should pass away.

• Durable power of attorney/healthcare proxy. This individual should be a person trusted to communicate the patient’s wishes and make medical decisions on the patient’s behalf.

Stage 2: Unstable

Stage 2, the unstable phase, revisits the care plan to adjust it as the illness progresses. If the patient may not recover, the care team focuses on helping them and their loved ones deal with what may come next. Medically, the care team will offer symptom management to the patient to mitigate pain and discomfort.

Dealing with a life-altering illness can take an emotional toll on mental health and well-being, and it can also be difficult for those who love and care for them. Within the palliative care team, professionals can help everyone deal with the roller coaster of emotions. The diverse group on the care team can offer different types of care as needed.

Depending on preferences, a counselor, therapist or psychiatrist — and a religious or spiritual leader — can be helpful. They can offer a safe space for the individual and their loved ones to talk about their feelings and fears and to deal with any anxiety or depression.

Stage 3: Deteriorating

If the illness progresses, the person does not respond to treatment, or the individual’s body continues to decline, it may be time to consider hospice or increased at-home care. The focus is on ensuring the patient is comfortable and their pain is controlled as much as possible. The patient may need more assistive devices to stay mobile. Medical treatment will continue as appropriate and as the individual wishes.

At this time, the individual’s loved ones may need a great deal of emotional support, so the care team also focuses on being there to help them through this difficult time. The emotional support team — family, friends and palliative care professionals — is also important, ensuring the individual doesn’t feel alone or hopeless.

Not everyone in palliative care reaches this stage. Because palliative care is specifically for individuals who have serious illnesses, many use only stage one palliative care for years and never progress to other stages.

Stage 4: Terminal

At this phase, the individual is nearing the end of their life and has a life expectancy of six months or less. Hospice care may be necessary to mitigate any pain and discomfort. As the individual’s body continues to decline, new issues may develop, including:

• Daily medical care becomes necessary.

• Their appetite decreases, or they have none.

• They become immobile or bedridden.

• They have difficulty swallowing medicine, solid food, and medications.

The palliative care team continues to coordinate care while also helping their loved ones through this phase emotionally. The terminal phase is especially difficult for family and friends as they say their last goodbyes.

Stage 5: Bereavement

At this point, the patient has passed on. The care team primarily focuses on the emotional well-being of the individual’s loved ones by offering bereavement support. Death can be incredibly difficult for the family and friends of the deceased and for the palliative care team who’s been with them throughout their illness.

Depending on loved ones’ needs, palliative care is available to help them through their grieving process. 

Palliative care can be beneficial to anyone experiencing a life-limiting or life-threatening illness. The numerous facets of professional caregivers assisting individuals throughout their time of need and serving the emotional needs of their loved ones are beneficial for everyone.

Explore Palliative Care services at Methodist, or call 901-516-1600.