Is Palliative Care Right for Me?
If you are experiencing pain associated with a serious illness and do not have a terminal diagnosis, palliative care might help you get the care you desire.
What if you or a loved one were diagnosed with a serious illness? Would you know the next logical step to take? The answer can be “yes,” fortunately, due to a medical subspecialty known as palliative care.
“Sometimes, when people hear ‘palliative care,’ they associate it with hospice and think they are dying,” said Maria Roesler, RN, MSN, Director of Program Development for Hospice and Palliative Care for Barnabas Health, VNA in New Jersey. “The purpose of palliative care,” she continued, “is to allow patients to be in control of what happens to them while they are being treated. It does not signify end of life [EOL] treatment.”
Because palliative care is a relatively new subspecialty, some physicians may not be familiar with it, Roesler said. She advises patients to ask their primary care physician about it.
Palliative vs. Hospice
Palliative and hospice care focus on quality of life for patients and families who face life-threatening illness. But with palliative care, the patient need not have a terminal diagnosis and treatment can be on going. For example, a patient with congestive heart failure may have been making frequent trips to the hospital, but with palliative care, she would be kept comfortable (pain free) at home while still receiving treatment for the illness as determined by the physician.
For a patient in hospice, life expectancy is no more than six months and patient and doctor have agreed to end all but comfort care.The patient in this case would have accepted that treatment was at an end, but he would still receive aggressive pain management.
The goal in both cases is to make the patient as comfortable as possible—but only in palliative care does the patient have the possibility of recovery. About 30% of palliative care patients wind up in hospice care, according to Audrey Radin, MD, who is board certified in hospice and palliative medicine.
Most insurance plans including Medicare and Medicaid cover all or part of the palliative care treatment you receive, just as with other medical care received in a hospital, outpatient clinic or long-term care facility. Be sure to clarify any financial concerns with your insurance company or by speaking with a social worker or financial consultant from the palliative care team.
A Team Approach
“A lot of chronic illnesses cause burdensome symptoms that impact on quality of life,” said Roesler. “So palliative care members work as a team to ease the symptoms and help decide what types of treatment, if any, the patient wants.”
Most palliative care teams consist of a physician, an administrator, a nurse practitioner, and a social worker. Members of the team consult with the patient’s physician for decisions about symptom management and to discuss goals of care. “What we try to do is help them formulate a plan based on what’s important to them,” said Roesler. Depending on the patient’s needs and wishes, the team could include anyone from a chaplain to a practitioner of pet or music therapy.
Do I Need a POLST?
Once that plan is devised, a patient in palliative care has the option to fill out a POLST, which provides medical orders for current treatment. The acronym stands for Physicians Order for Life Sustaining Treatment. (Some states call them MOST, Medical Orders for Scope of Treatment).” Here is what a POLST is and does:
- A legally valid physician’s order stating the patient’s wishes, including treatment and choice of surrogate.
- A document that is usually filled out by the patient in consultation with doctor, nurse, social worker, or chaplain.
- A document that becomes part of the patient’s medical file and stays with the patient wherever he or she goes. In the home setting, a POLST form should be in an accessible location such as the patient’s bed or displayed on the refrigerator.
- A legally binding document.
- Unlike an Advanced Directive, a POLST is accessible to medical personnel at all times, whereas a DNR (Do Not Resuscitate) might only be written into an Advanced Directive and kept with the person’s Last Will and Testament documents in a file or safety deposit box outside the home. A POLST should accompany—not replace—an Advanced Directive.
In short, the POLST tells medical personnel who encournter the patient exactly what the patients wants to have done and not done for him. For an example of a POLST or to download the form, go to http://capolst.org/wp-content/uploads/2015/12/2016_CA_POLST_English.pdf
Treatment and the Family
According to Dr. Radin, “Sometimes the treatment is worse than the disease.” Two common treatments the patient and family might choose to rule out (because they are unpleasant and prohibit speech) are: artificial nutrition, which inserts a feeding tube down the throat; and assisted breathing through a ventilator, which puts a tube from the throat to the lungs.
At a certain point, a patient might opt for a ventilator on a temporary basis, and can state that in a POLST. The same patient may also make clear that he or she does not want to be kept alive indefinitely on a ventilator. And this can make an enormous difference for the family. Dr. Radin said that “legally, ethically, morally, there’s no difference between removing a ventilator and never putting one in. But emotionally it’s a world of difference.The POLST takes the burden off the family.”
With palliative care you can expect improvement in your ability to go through medical treatments. Designed to treat the whole person, palliative care can help you to better understand your illness and your medical care options.