End-of-Life Care and Decision Making

We help with difficult decisions when support is needed most

As America’s population ages, families and patient surrogates are increasingly finding themselves making difficult end-of-life decisions for those who can no longer make those decisions for themselves. Families and court-appointed guardians must make these choices using ethical principles for what is the right course of care for an individual.

The New York State’s Family Health Care Decisions Act (New York State Public Health Law, Article 29-CC) or FHCDA provides a roadmap to navigate this difficult process. The FHCDA allows a surrogate, who can be a family member, friend, or court-appointed guardian to make decisions for a person who lacks the capacity to do so. For example, the surrogate can decide on whether to withhold or to provide life-sustaining treatment for a terminally ill or permanently unconscious patient. Guardians in New York are legally bound to follow the protocols of the FHCDA when making end-of-life decisions.

Decisions, however, should go beyond a mechanical application of the law. A family member, caretaker, or guardian should think and plan ahead — before a challenging decision about a person’s care ever comes to pass.

For caretakers, and for a guardian (early after the guardianship appointment), every effort should be made to know a person well and to understand what their personal wishes would be for their end-of-life care. Hard questions must be asked. 

A family member, caretaker, or guardian should think and plan ahead before a challenging decision about a person’s care ever comes to pass.

Would a person want a feeding tube? Would they want to be resuscitated or that a Do Not Resuscitate (DNR) order be in place? What are the person’s religious or spiritual beliefs? If a person is no longer able to communicate, the guardian should seek answers by talking with relatives or friends. Such discussions about deeply sensitive issues of mortality and end-of-life care are never easy, but they are essential. 

When discussing care options with medical professionals, a guardian should ask the right questions to fully and carefully evaluate all possible courses of treatment — and weigh the risk potential of any intervention with the likelihood for recovery and relief from pain. What are the chances an individual will survive, or might they relapse? Can a former level of functioning be regained? 

In all cases, a decision should be based on a person’s best interests and prognosis — with heavy consideration given to what decisions they would have made for themselves. More care is not necessarily better care. Sometimes, the right decision means making the difficult decision to withhold treatment and to instead pursue hospice or palliative care. 

At Project Guardianship, we are often called upon to make medical decisions and give consents for major interventions such as blood transfusions, the placements of feeding tubes or ventilators, and surgeries for the critically ill. We evaluate and weigh what is a necessary intervention and what is an unnecessary one that will not improve a person’s quality of life or prognosis. Whatever the decision, we will always strive to make sure that our client may die with dignity and that their experience of pain and suffering is minimized.