What is palliative care?
Palliative care (from the Latin term “to cloak”) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure.
Patients with myeloproliferative neoplasms (MPNS), may at some point need to face the fact that their condition will not improve and in some cases it may get worse. Palliative care is for people living with any illness where a cure is no longer possible as well as for people who have a complex illness and need their symptoms controlled. Palliative care aims to treat or manage pain and other physical symptoms. It will also help with any psychological, social or spiritual needs.
The aim of palliative care is to help MPN patients and everyone affected by their illness to achieve the best quality of life and palliative care may be offered in parallel to other MPN treatments.
Palliative care can improve a patient’s quality of life and aims to provide relief from pain and other distressing symptoms. It always supports life and regards dying as a normal process and patients should be assured that it doesn’t quicken or postpone death. It also takes into account the psychological and spiritual aspects of care and offers a support system helping the patient’s family cope during illness and in bereavement by involving a multidisciplinary team approach to manage the needs of the MPN patient and their families.
Palliative care is a misunderstood term – but the goal is comfort.
Myths about palliative care
Some people believe things about palliative care that are not true.
MYTH: I’ll have to go to a hospice.
REALITY: Palliative care is offered in a range of settings including in your home, a hospital, a care home or a hospice.
MYTH: It means my doctors have given up and I’ll no longer receive active treatment for my MPN.
REALITY: Care will be offered alongside active treatments that still benefit the management of your MPN.
MYTH: I’ll no longer be seen by other specialists who know about my particular illness.
REALITY: patients will receive palliative care support alongside care from the specialists who have been treating your MPN.
MYTH: This care is just about treating pain and other physical symptoms?.
REALITY: The aim is to provide a holistic approach to give you the best possible quality of life. This means caring for all your physical, emotional, psychological, social and other needs.
MYTH: Only MPN patients who are ill can benefit from this approach.
REALITY: Palliative care teams are very aware that caring for someone with a chronic debilitating MPN illness can have a big impact on family members and friends. The care teams do what they can to help people manage as well as they possibly can.
Is palliative care the same as hospice care?
No. Palliative care may be provided at any time during a patient’s illness, even from the time of diagnosis. Most importantly, you can receive palliative care at the same time as treatment. Hospice care always includes palliative care, but hospice care is different because it focuses on terminally ill patients who no longer seek treatments to cure them and who are expected to live for about six months or less.
Here are some practical tips contributed by Brenda Keenan (Registered nurse, Masters in Nursing and Certified Case Manager in Los Angeles, California, US)
When MPN patients are experiencing a diminished quality of life due to a chronic illness, palliative care can help. A team of medical professionals from several disciplines work together to assist patients and their families in alleviating suffering and improving quality of life. This comprehensive approach to treatment focuses on the physical, psychological and spiritual needs of the patient. The goal is to offer the best quality of life available to the patient by relieving suffering and controlling pain and symptoms.
This relatively modern branch of medicine dealing with pain, symptom relief, and emotional support is especially effective when patients have cancer and heart failure. Palliative care is not a one-size-fits-all approach as MPN patients have a range of medical issues and respond differently to treatment options. The care customizes treatment to meet the individual needs of each patient.
The team includes the patient
The patient is a part of the team including doctors, nurses, and social workers, chaplains, massage therapists, pharmacists, nutritionists and others. You as a patient have a vital role:
- Keep a journal that records your specific treatments, diagnostic tests, and medications with the dates and location of treatments.
- Record names of doctors and telephone numbers you may need in your journal.
- Record symptoms along with the intensity of any pain, any shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping
- Take your journal with you to doctor visits and clinic appointments. You can improve your treatment and help your medical team care for you when you participate in gathering data and planning treatment. This approach can improve your ability to tolerate medical treatments, and helps you understand your care choices.
If you can’t obtain palliative care
Sometimes palliative care as such is not available to patients who are fairly well. In this case you can still improve your quality of life and reduce pain and other unpleasant symptoms by taking a proactive approach.
- Keep a log of your symptoms as described above.
- Talk with your carers about how you feel, be honest and persistent and provide detailed information.
- Keep careful track of your symptoms so your medical care team can problem-solve with you.
- Complementary medicine can provide solutions to seemingly intractable problems and is well worth a try. You can learn more on our integrative treatment and stress reduction pages.
- Ask your care team for advice and resources.