Helping the Terminally Ill
The terminally ill need to know how to get palliative and hospice care.
Posted December 14, 2016
HELPING PEOPLE WHO ARE TERMINALLY ILL
It was 1998. My wife was diagnosed with stage IV lung cancer. I was struck by how directly the oncologist broke the news to my wife. She simply said, "The results of the evaluation show you have stage IV lung cancer." We both felt numb. We could barely think. What happens now? What did "stage IV" really mean? What was the survival rate? Did this mean she needed chemotherapy and radiation? All of these questions and more hung in the air. We needed help. We needed palliative care but, frankly, we had no idea how to access it.
The oncologist presumed my wife wanted chemotherapy so other options were never discussed. Everything progressed in a whirlwind fashion. Palliative care provides a critical service. A terminally ill patient struggles under the weight of the diagnosis and needs a team of caregivers to prop her up.
What is palliative care and how does it differ from hospice care?
Palliative care is patient and family-centered care that optimizes the quality of life by anticipating, preventing, and treating suffering. The National Hospice and Palliative Care Organization was founded in 1978 as the National Hospice Organization. The name was changed in 2000 to include palliative care.
Although hospice and palliative care both provide comfort and support, palliative care is offered earlier in the disease process. If a person has a terminal diagnosis, usually defined as having a life expectancy of six months or less, and is approaching the end of life, he or she might be eligible to receive hospice care.
Where and how does a person find palliative care?
When you are faced with a diagnosis similar to my wife's, the first thing is to talk to your doctor and ask for a palliative care referral. Whether you are in the hospital or at home a palliative care team can help you. Explain to your doctor what quality of life you want. For example, how much time do you want to spend with loved ones? What level of pain are you willing to tolerate? What treatments are you willing to accept?
Cancer centers and hospitals may have palliative care specialists on staff. The patient is asked the question seldom heard in the hospital: "What are your goals for this stage of life."
Palliative care seeks to address not only physical pain, but also emotional, social, and spiritual pain to achieve the best possible quality of life for patients and their families. Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process.
When should a patient be told she is terminally ill?
That question is debated. On the one side, there are those who believe the patient needs to know she is terminally ill. For example, one line of thought is that a doctor should be truthful from the very beginning. The belief is that a patient needs to know what to plan for. Others believe the term "terminal illness" is too vague and that it should not be used with patients. They believe a discussion with the patient should be linked with what is possible to do with medical intervention, what is futile and pointless and what treatment still might be beneficial.
I was a psychologist before I retired. I agree with Dr. Art Caplan at New York University that patients have heard the phrase "terminal illness" and understand its meaning and limitations. I believe that patients can deal with bad news and prefer the truth. I think it's possible to say something like, "I believe you are terminally ill, but I cannot predict how many months you have to live. But I can tell you with certainty that you will not be abandoned." Knowledge is power and it is important to check how much information the patient wants
Recognize patients differ.
It is important to recognize that patients have different levels of tolerance for bad news and that some patients fear disclosing their feelings. These are the patients who are especially in need of palliative care. They need someone with whom they feel safe and who is skilled at counseling and intervention. The fact that patients are so different supports the importance of palliative care.
How does a person find palliative care?
1. Begin by asking your doctor for the names of palliative care providers and symptom management specialists in the community.
2. A local hospice may be able to offer referrals.
3. Area hospitals and medical centers can provide information. For example, the Center to Advance Palliative Care has a list of providers by state.
4. Some national organizations have specific databases for referrals. For example, https://getpalliativecare.org/providers/
5. The National Hospice and Palliative Care Organization's website also has a list of providers: http://www.nhpco.org.
My wife lived a little over four months. The team of palliative caregivers would have helped my wife face her fears and frustrations. Palliative care helps patients define their quality of life and take control.