How To Talk About Death and Dying — Part 2 of 2
By: Shelly Tat
Tags: Stories That Matter, End Of Life Planning, Death And Dying, Covid 19, Advance Planning

Photo by Marcelo Leal on Unsplash

“Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come — and escape a warehoused oblivion that few really want.”

- Atul Gawande. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, 2014.

*Name has been changed.

Death and dying is not new. Rather, the discussion of death and dying is paramount given the current global pandemic leading to over one million deaths from COVID 19 worldwide. In part 1 I talked about Mei* an elderly Chinese female who suffered a stroke resulting in minimal quality of life, and the difficult decisions her children were forced to make regarding her care. Pre-COVID 19 allowed family members who called Mei a mother, sister, grandmother, or aunt to gather in Mei’s room and discuss plans for compassionate care. Multiple family members could be present to hold her hand, stroke her hair, and be present during her time of death. With COVID 19, strict visitor restrictions and guidelines have left loved ones infected with COVID 19 who are dying, to die alone. This heightens fears of abandonment, and guidance is needed to provide humanistic compassionate care to both dying patient and their family members during the pandemic. On the other hand, the vast amount of COVID 19 deaths highlights the importance of discussing end-of-life goals of care (GOC) in order to ensure a person’s wishes are “respected in their final hours and that their quality of life is preserved in the dying process.”²

It then becomes important to initiate conversations with loved ones regarding their GOC priorities, values, and wishes with the desire of providing patient centered care that focuses on quality of life. Early discussions including end-of-life care wishes reduces patient suffering, avoids unwanted invasive care, and helps reduce family anxiety. There are many different avenues to start a discussion regarding difficult goals of care conversations, with one avenue being through a person’s primary care provider (PCP) or family doctor.

During an appointment with a primary care provider, whether it is during an annual visit, after a hospitalization, prior to an intervention such as surgery, or specifically to discuss end-of-life GOC, a discussion regarding GOC is necessary. In the visits to one’s PCP it is important to outline one’s values, goals, and fears to consider the how medical management affects “remaining independent, being free from pain and other forms of suffering, being mental[ly] alert/competent, and living long enough to accomplish a specific milestone or attend a cherished event.”¹

In many cases an appointment with one’s PCP to discuss GOC may include introducing specific documentation that is state specific. In many midwest states, the MOST form (Medical Orders for Scope of Treatment) is used while the POLST (Physician Orders for Life-Sustaining Treatment) is used other states. These forms³ outline a person’s goals for treatment near a person’s end-of-life including if he/she would want cardiopulmonary resuscitation (CPR), intubation or being put on a ventilator if he/she heart were to stop. It also outlines whether the person would want any other interventions including antibiotics, procedures that would provide medications to prolong the person’s life, and desire for artificial nutrition. The MOST or POLST form is not the same as an advanced directive, but it provides medical teams caring for a person an understanding of a person’s wishes.

Photo by Scott Graham on Unsplash

An advanced directive is a legal document that may be a living will or power of attorney for health care that covers what POLST or MOST covers as well as other wishes of a person who created the document. See state specific advance directives for free⁴or at five wishes⁵

· A living will is a document that outlines a person’s medical treatment goals including end-of-life care such as whether he/she would want cardiopulmonary resuscitation (CPR), intubation or being put on a ventilator if he/she heart were to stop, pain control, organ donation, and more.

· A power of attorney (POA) for health care grants a person of choosing the ability to make medical decisions for the person. The medical decisions include those outlined in a will as noted above.

Another reason having GOC conversations with a person’s PCP is important is because a physician considers special scenarios specific to individuals. These special considerations include cultural differences and expectations or beliefs that may play a significant role in how a person may want to be treated. Additionally, if a person has an implanted device such as defibrillator, a discussion of whether the person would want their device deactivated during end-of-life is warranted. A primary care provider may also refer a person with a serious illness to palliative care. Palliative care specialists⁶ are physicians who have additional training to further assist and provide guidance to a patient and the patient’s families regarding medical treatment and goals.

A person’s goals of care may change as a person values and desires change. It is therefore reasonable to continue to have GOC conversations on an annual basis and have appropriate documentation of the changes. One can use the COVID 19 pandemic as a catalyst to have a difficult conversation with loved ones should they be hospitalized for any reason. Having goals of care discussions and advanced planning now is vital for preserving a person’s dignity later.

References

1. Dunlay, Shannon, and Strand, Jacob. “How-To Discuss Goals of Care with Patients.” Trends Cardiovasc Med. 2016; 26(1):36–43.

2. Sutherland, Ryan. “Dying Well-Informed: The Need for Better Clinical Education Surrounding Facilitating End-of-Life Conversations.” Yale Journal of Biology and Medicine. 92 (2019); 757–764.

3. Everplans: https://www.everplans.com/articles/state-by-state-polst-forms

4. AARP: https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/

5. Five Wishes Website: https://fivewishes.org/

6. Palliative Care: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care