By Liz Cohen, L.C.S.W.
Discussions about the end of life are often taboo. This is especially true in America, where many feel uncomfortable speaking of or even contemplating their healthcare wishes in the face of terminal illness and where advanced medical interventions are able to keep people alive longer.
In New Jersey, patients near the end of life are treated with more aggressive medical care than in any other state in the nation, according to the Dartmouth Atlas of Healthcare. However, as the New Jersey Hospital Association notes, there is little evidence that this more aggressive care leads to better outcomes.
How then can patients achieve death with dignity, where their wishes are understood and respected by their families and healthcare team?
Understanding and discussing the choices that are available are good first steps toward reducing the stress and anxiety often associated with the end of life.
The primary goal of palliative care is to relieve pain and suffering while a patient is undergoing treatment for a chronic, progressive, or serious illness, such as cancer, stroke, a neurological disorder, and heart, kidney, liver or respiratory disease.
Palliative care is designed to complement treatment and is largely focused on reducing symptoms, including pain, anxiety, and fatigue. This type of care often incorporates measures such as massage, acupuncture, meditation, and arts therapies to maximize comfort.
Hospice care is a specific subset of palliative care in which patients have an anticipated life expectancy of less than six months and would like their medical care to focus on comfort and quality of life.
Patients and their families typically choose hospice care when potentially curative or disease-modifying treatment for a terminal illness is no longer appropriate or desired. Through hospice care, patients and families know that care will come from an interdisciplinary team using a multifaceted approach for comfort and support.
Goals of Care
While discussions about death and dying can be difficult, establishing goals of care and outlining your end-of-life wishes with your family and your healthcare provider can help bring peace of mind.
What is most important to you? Are there certain personal goals or family milestones like attending a wedding or the birth of a grandchild that you would like to reach? Are there certain religious, cultural, or spiritual practices that will influence your care?
Do you have a sense of your wishes for life-sustaining treatments such as artificial nutrition, intubation, or resuscitation? Talking about these elements does not mean that you don’t want them. It means that you can consider them and make your wishes known.
To help guide those conversations, New Jersey residents have access to the Practitioner Orders for Life-Sustaining Treatment (POLST) form, a medical order that provides a framework to assist individuals in laying out their wishes in a conversation with their doctor or other healthcare practitioner.
The POLST form complements an advance directive, which is a legal document in which you can state your medical wishes and choose who will make medical decisions for you if you are not able. The advance directive cannot be used to affirm a do not resuscitate order if this is your wish. For that, you need a physician or nurse practitioner’s signature, which the POLST provides.
Choosing a person as your healthcare proxy is an important part of this process. This person should be someone you trust to carry out your wishes and who will be comfortable doing so.
In addition to the POLST form, many individuals also use the Five Wishes approach to establishing goals of care.
A program of the Aging with Dignity organization, the Five Wishes approach is a model that walks people through the following five most important things to talk about when it comes to advance care planning.
- Who is the person I want to make healthcare decisions for me when I can’t make them for myself? Tell that person why you chose them and explain your reasoning to everyone in your family. Make sure the person you chose knows your wishes and will honor them.
- What kind of medical treatment do I want or not want? This is essentially your living will. Under what circumstances would you want or not want interventions like a ventilator or artificial nutrition? What about resuscitation?
- How comfortable do I want to be? Consider what brings you comfort and what things you want to have around you at the end of life. Talk about pain relief and whether being alert or drowsy matters to you. Also, discuss hospice care.
- How do I want people to treat me? Explore what death with dignity means to you, and what kind of personal interactions and support you value.
- What do I want my loved ones and healthcare team to know? This is an opportunity to think about how you want to be remembered and what else you want your healthcare team to know about you in order to provide good care. It is a chance to express your feelings, share your emotions, and make amends if necessary.
The Five Wishes framework can be another helpful tool in completing the POLST form.
In this time of the COVID-19 pandemic, life seems to be filled with more uncertainty than ever. Talking about your healthcare wishes might not resolve those uncertainties, but it can help you feel less alone when facing them.
Penn Medicine Hospice Princeton Health is dedicated to providing compassionate clinical care to patients with life-limiting illnesses, while supporting their loved ones. The team uses a holistic approach to meet the emotional and spiritual needs of both as they work through end-of-life issues. The team also supports patients’ efforts to live a full and meaningful life for as long as possible.
For more information or to reach a member of the hospice team, call 609.497.4900 or visit www.princetonhcs.org.
Liz Cohen, L.C.S.W., is a licensed clinical social worker with Penn Medicine Hospice Princeton Health.