Merrily Orsini's Thought Leadership

End-of-Life Care: Necessary Discussions Often Avoided

Stop avoiding end of life care discussions.

Stop avoiding hard discussions around end of life care.

As we age, perhaps the greatest single discussion we can have with our grown children is what we want done—or not done—to us, for us, and on behalf of us, as we approach our last decades, and the possibility of needing assistance, and the inevitability of our passing.

End-of-life care discussions not only give us peace of mind that our medical and health wishes will be fulfilled, but also give our children, or other caregivers, peace of mind on exactly what we would like to have done when they eventually face a myriad of healthcare decisions on our behalf, particularly if we develop a cognitive impairment that takes away our ability to make sound decisions for ourselves.

To improve the quality of end-of-life care, and to promote the need for caregivers and patients to have such discussions, the independent Institute of Medicine recently released a comprehensive report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. From the report brief:

 Many people nearing the end of life may not be physically or mentally capable of making their own care decisions. In addition, family members and clinicians may not be able to accurately guess what a person’s care preferences may be. Therefore, advance care planning is critically important to ensure that patients’ goals and needs are met. Although advance directive documents can be useful, they should allow health care agents and care providers to make informed decisions in certain circumstances and should not take the place of open, continuous communication. According to the IOM committee, the advance care planning process can begin at any age or state of health and should center on frequent conversations with family members and care providers.

Sadly, many patients and their caregivers haven’t had this critical discussion. You might expect your doctor to bring up end-of-life care issues, but many don’t or aren’t comfortable bringing up these issues, possibly worried that the patient or their caregiver will take it as if the doctor has given up on them.

End-of-life care discussions should include:

What you want your life to be like as you age?

Would you like to stay in your own home?

Who would you choose as your caregiver?

Who is in charge of your estate, and have you designated a durable power of attorney?

Who is in charge of your healthcare decisions, and to whom will you give your health care proxy?

Have you filled out a living will, being as specific as you want about your future health care and medical treatments (Do you want doctors to do everything possible to prolong your life, nothing at all in the event of a terminal illness, no artificial respiration, etc.)?

In the event of a heart attack or stroke, do you want to be resuscitated and have you filled out a “Do Not Resuscitate” form, otherwise known as a DNR?

For those who haven’t had the discussion, home care agencies offer a great starting point when the patient requests your services. With tact and grace, many home care agencies have home care social workers who can help facilitate the discussion and point clients to services they didn’t know existed while having a discussion they might have thought too difficult to have. In fact, I find the opposite to be true. In the absence of end-of-life care discussions and documents, patients and their caregivers are often left with difficult decisions during emergencies and even day-to-day tasks. Children often have opposing ideas as to what a parent would have wanted, and family issues explode in a time of crisis when a parent’s last wishes (unknown) are vehemently championed on opposite sides.

In many cases, end-of-life care decisions are left up to doctors, both those who do and don’t know the patient, with devastating consequences, according to a recent Boston Globe op-ed by Dr. Angelo Volandes, who is on the faculty at Harvard Medical School and Massachusetts General Hospital. Because doctors are tasked with saving lives, even those with a terminal illness without a DNR often go through the extensive trauma of resuscitation that does little to prolong their life but adds pain and misery to their final days.

Volandes tells of a terminal cancer patient who was resuscitated four times but died 48 hours later, of his cancer. But the process of “saving” him resulted in multiple broken ribs and “a tube or catheter in almost every part of his body, for a grand total of eight plastic intrusions, including an endotracheal tube (lungs), two central intravenous lines (veins), an arterial line, a nasogastric tube (stomach), a foley catheter (bladder), a rectal trumpet tube, and a tube placed in the sac of his heart to drain fluid.” He was “fixed,” Volandes writes in the op-ed, but at what cost to his suffering and that of his family?

Dr. Volandes’ new book, “The Conversation: A Revolutionary Plan for End-of-Life Care,” is also a great starting point and resource to begin your end-of-life journey. The way you intend it.

These conversations aren’t easy, and indeed, there are those who want everything done to prolong their life and those who want nothing done at all, and a wide spectrum in between. Stating the who, what, where, when, and why makes the road ahead less difficult for the patient, the caregivers, and the extended family.