Opting out of a Time-of-Death Visit

Insights From Home Hospice Family Members

Katherine S. Katzenberger, MN, RN, CHPN; Michelle Nichols, PhD, RN

Disclosures

Journal of Hospice and Palliative Nursing. 2019;21(4):326-332. 

In This Article

Abstract and Introduction

Abstract

Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family's experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver's previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.

Introduction

According to the National Hospice and Palliative Care Organization, in 2015 more than 1 million people died in the United States while on hospice care.[1] Hospice patients die in many settings, including at home and in an adult family home, skilled nursing facility, assisted living facility, hospital, or hospice care center.[1] Among those who died in 2015 on hospice care, more than 44.4% died at home.[1] In home-based hospice, family members often take on the role of primary caregiver for their loved ones, and because hospice provides a holistic approach to care, it does not end the moment the patient dies, but rather extends to the family at the time of death, and bereavement services continue for 13 months afterward.[2]

It is well known that families who experienced the death of their loved one in a hospital setting express the importance of having privacy during the final moments to say their goodbyes.[3] Many also convey that having opportunities to assist with bathing and dressing the body positively supports them through the difficult experience.[3] Unfortunately, minimal research is available regarding home hospice families and the supports they want or need at the time of death. Evidence does demonstrate that anticipatory grief is often greater in intensity and complexity than after the death of their loved one, and researchers have expressed the need to improve hospice and palliative care experiences and support for families during and after their loved one's death.[4,5]

In the United States, there are no national standards requiring a time-of-death (TOD) visit to assess for cessation of life, and individual state or county practices for pronouncement are not clearly stated in the literature.[6] As a result, standards for pronouncement at time of death are set by states and counties and are not always required, thus allowing families in some areas to choose whether they want to have a TOD visit.[7] A TOD visit can occur when the clinician is present for the patient's death, but more commonly, it occurs after the patient dies. In the latter case, the clinician visits the patient's home while the body is still present.[8] Some families indicate a preference of not wanting people outside the family or their immediate support system to be present at the time of death.[9] Research is needed to determine why hospice families choose not to have a TOD visit, whether they remain satisfied with their decision to not have a TOD visit, and if complex or sustained grief results from this choice.

This qualitative study explored the experiences and determining factors of home hospice family members who chose not to have a TOD visit when their loved one died. Specifically, our study was aimed at addressing the following research question: What are the experiences and perspectives of home hospice families who chose not to have a TOD visit? Although the literature describes TOD visits that occur after the patient has died, few studies have explored how a TOD visit impacts the family and, more specifically, whether a TOD visit was an important factor in the bereavement experience for home hospice families.

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