How to Live With Independence While Under End of Life Care

It’s the nation’s independence day, and that got us thinking about our individual independence — establishing it even when facing the end of life. But even in hospice in Santa Clara and elsewhere, we can celebrate the freedom to make independent choices. However, if you are facing a terminal illness, you may feel anything but free. You may fear you will lose your independence, freedom of choice, and dignity to your illness. You may feel that your illness has robbed you of the ability to make decisions about your medical care. But this couldn’t be farther from the truth.

One basic principle of the hospice philosophy of care is that everyone has a right to self-determination when it comes to their medical care. Bottom line is, you get to choose. And that is the most basic kind of freedom. In fact, your right to control treatment according to your own preferences is protected by the Federal Patient Self-Determination Act, which was passed in 1990 by Congress.

End-of-life care restores control and empowers patients to choose how they want to live their best lives during their remaining time here. Indeed, this acceptance of hospice care can be viewed as a reclamation of power and control: the power to do things on your own terms, the power to take back control of your situation.

Regaining Power

To make the best care decisions, patients must understand the reality of their prognosis and be fully educated on the options available: the essence of informed consent. This is one focus of the multidisciplinary hospice team. You can and should take control of your hospice plan. This should be a collaborative effort between the patient, hospice care team, health care team, and family members, if applicable. Together, you can create a care plan that works for you. This plan shows what you want, and that may include staying comfortable, eating and drinking, and engaging in activities for as long as you are able, says Cancer.net. Don’t worry: this is a fluid document. You can update the plan as the weeks and months progress depending on how you feel and how your goals are changing.

It’s all about finding ways to make your life important, to see those parts of your life that are of the most important to you, whether that’s spending more time with grandkids, tending to your garden for as long as you are able, taking a drive to the beach, or seeing family frequently. It also touches on pain management, so you can have control over that area as well. End of life care plans can help you feel like you can take control back from a situation you may feel you have no control over, points out Get Palliative Care.

Establishing Goals of Care

Starting at the first consult, hospice team members should guide conversations with patients and their loved ones to determine their physical, spiritual, and emotional needs to better establish the goals of care. The care team should ask detailed questions, listening closely to the answers so they can assess what is most important to the individual, and guide decisions accordingly. The goal is to enhance their quality of life and keep them in the driver’s seat for as long as possible.

Questions may range from “what are some defining characteristics and life experiences you have?” or “what hobbies and activities bring you joy?”. They may also gently explore sensitive issues, such as a patient’s concerns or fears they may be having about their illness, or how their passing will impact the loved ones they will be leaving behind.

Pathways’ philosophy is that you are your own best expert and know how you want to live. As such, we believe in patient-directed, holistic end-of-life care designed to improve quality of life for the patient’s remaining months, weeks, and days. This is achieved through the involvement of the patient’s own wishes and goals in the decision-making process. But the hospice conversation is not solely about death; it’s more about how the patient wants to live their life, and what is meaningful to them as an individual. Indeed, effective end-of-life conversations empower the patient.

Toward the end of one’s life, where the ability to heal is minimal, people hear a little voice inside. What does yours say? Listening to this little voice equals true informed consent, and when you can talk through this with people who work with individuals like you every single day, you are provided with a pen to write the script of the rest of your life.

Contact Pathways Home Health and Hospice

As we celebrate Independence Day here in America, so too do we celebrate the independence of each individual making their way through end of life care. To learn more about how we can guide you and your family through, contact us at 888-978-1306.