A life-changing or serious illness can alter your quality of life. When you have a serious illness, the support of your medical team, family and friends makes a difference. This is where palliative care helps.
You might think palliative care is only for people with a terminal illness, but that's not entirely true. Any person diagnosed with a chronic, serious illness can benefit from palliative care to improve their quality of life. Supportive palliative care starts from day one.
The focal point of palliative care is to provide better holistic symptoms management, pain, stress and symptom management for as long as your illness lasts, in coordination of ongoing concurrent treatment or if prognosis is six months or less (hospice care).
What is Palliative Care?
Palliative care is patient-centered and family-focused. It is provided by a team of palliative care doctors, nurses, social workers and others who work together with a patient's other doctors to provide an extra layer of support. (Center to Advance Palliative Care)
Palliative care is more than simply managing your medical needs – it is a way to live life. It's providing compassion and quality care to you and your family members.
Are There Different Kinds of Palliative Care?
Yes. There are two types: supportive palliative care and hospice.
Supportive palliative care focuses more on pain and comfort level, while at the same time allowing other disease interventions, such as attempts at cure or remission.
Hospice care, or end-of-life care, addresses the life-ending stage of a serious illness when no further curative or life-prolonging therapy is desired or available or when the adult patient or family member does not want to pursue it. When standard curative treatment begins to hurt and not help, intensive comfort measures, such as pain and symptom management, is an option.
Who Can Benefit from Palliative Care?
Anyone with a chronic, serious or life-limiting illness can benefit. Palliative care frequently is misunderstood as hospice or end-of-life care. However, you can receive supportive palliative care services at any stage of an illness. The earlier you access supportive palliative care services, the better your quality of life will be.
People receiving palliative care:
- Receive treatments that accommodate their wishes
- Experience less pain and other types of discomfort
- Have fewer hospital readmissions
- Often live longer when diagnosed with cancer
You are not the only one affected by your illness. Your family members also might need support. Benefits of palliative care for family members include:
- Improved family and patient satisfaction.
- Better coping.
- Less conflict and emotional distress.
- Less depression,
- Less post-traumatic stress symptoms.
Take the quiz to help determine whether palliative care might be right for you or someone close to you.
Who Do I Call to Get Palliative Care?
If you think you or a family member would benefit from palliative care, talk with your doctor or health care provider.
How Can I Pay for Care?
As a recognized medical specialty, supportive palliative care interdisciplinary team services are covered by Medicare, Medicaid and many commercial insurance plans. Hospice is a Medicare and Medicaid benefit; it also is covered by many commercial insurance plans as well. Services also might be available for veterans from the Department of Veterans Affairs.
How Can I Plan for a Serious Illness?
Living wills/advance directives are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself.
Advance directives allow you to record your goals and wishes so your medical team and caregivers know what they are.
By planning ahead, you are more likely to avoid unwanted or unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief. You also help reduce confusion or disagreement about the choices you want people to make on your behalf.
Advance directives are not only for older adults. Unexpected end-of-life situations can happen at any age, so all adults should prepare these documents. You should talk to your loved ones and medical providers as you get ready to prepare your documents so they understand your wishes. To learn more, visit the Texas Hospital Association website. If you have questions about completing the form, talk to your health care provider and/or a member of your health care team.
Texas Health and Human Services provides advanced directives on its website. They include:
- Directive to Physicians and Family or Surrogates, also called a living will, lets you communicate your wishes about the type of medical treatment you want if you are terminally or irreversibly ill and are unable to make your wishes known because of your illness or injury.
- Medical Power of Attorneygives the person you name the authority to make all health care decisions for you in accordance with your wishes, including religious and moral beliefs, when you are no longer capable of making those decisions for yourself.
- Texas Out-of-Hospital Do Not Resuscitate (PDF) is an order, separate from a living will or medical power of attorney, signed by a doctor and the patient or surrogate allowing you to refuse certain treatments such as chest compression, defibrillation, or intubation if your heart stops or you stop breathing when outside the hospital. These orders apply only in the state of Texas and are specific to a variety of locations where health care professionals can be called to aid, including long-term care facilities, in-patient hospice facilities, private homes, hospital outpatient or emergency departments, physician's offices, and vehicles during transport.
- Declaration for Mental Health Treatment lets you decide about three mental health treatments – psychoactive medication, convulsive therapy and emergency mental health treatment.
There are two other issues you might wish to consider:
- The Texas Legislature recently passed a new law impacting patient or surrogate consent for in-hospital Do Not Attempt Resuscitation (DNAR, also known as DNR) orders. Rules related to that legislation are pending. Until further notice, check with your local health care institution or provider. If you are certain you do not want CPR in the setting of a terminal or irreversible illness, we recommend adding that to your living will. If you do not want CPR attempted in any situation, consider completing an Out-of-Hospital DNR form.
- Statutory Durable Power of Attorney lets the person you designate take certain actions regarding your finances/property, but does not give the person rights to make healthcare decisions for you. This is the only directive that requires an attorney to complete with the patient.
Because the definitions above will continue to evolve, check back for updates.
Caring for the Caregivers
The Center to Advance Palliative Care offers resources for patients, families and health care professionals to become more familiar with palliative care services and benefits. CAPC offers a free introductory course for patients and families to understand palliative care services.
To learn more about what you and your family can expect when seeking palliative care, visit GetPalliativeCare.org.
Hospice also provides services to caregivers and the family. As a caregiver for a parent, spouse or child, you might feel overwhelmed. Use these resources and suggestions to help you find emotional and physical task support to ease your stress as a caregiver.