Pastoral Guidebook on end of life holds potential and pitfall - Part IV

Hospice & Palliative Care: “two evolving options.”

As use of technology increases at end of life patients spend longer periods of time in medical facilities at the end of life. At the same time 80% of people, according to the pastoral guidebook for end of life ministry being proposed to the 222^nd General Assembly of the PCUSA, express a preference for dying at home.  Hospice makes that possible.

The goal of medical care is to “cure illness or extend life.” The guidebook points out that in efforts to achieve that goal sometimes medical treatments mean that quality of life in the present is sacrificed for more time later on. Hospice, as an alternative, helps those with terminal illness enjoy life to the fullest in the present while relieving pain and promoting awareness for as long as possible. This is helpful information, not only for pastors, but for families seeking to understand what it means to put a loved one into hospice.

“Hospice is a program not a place.” Is another piece of critical information noted in the guide. A hospice program can take place at home or in a residential facility. Medicare and most insurance plans cover it although room and board charges may be additional. Hospice programs do not include treatment aimed at curing an underlying terminal illness (e.g. chemotherapy). Other things I have learned about hospice by by reading this paper include:

•         It is a team effort and the patient may choose either a personal physician or a hospice physician to guide their care.
•         One can be referred by a physician or self refer
•         Access to hospice programs is limited to those expected to live 6 months or less
•         Hospice teams provide emotional and educational support to patient and family and even help with paperwork, funeral planning and ongoing bereavement support following death.
•         The median stay in U.S. hospice programs is less than one month.
•         Hospice can be a time of personal and family growth.

In differentiating between ‘hospice’ and ‘palliative care’ it is important to note that hospice programs may include palliative care, but palliative care can also be provided in conjunction with treatment (e.g. chemo or radiation). Palliative care provides support to patient and families, seeks to manage symptoms of chronic or terminal illness and to improve quality of life.

Advance Directives

Advance directives is a legal document (or documents) that specifies the types of medical care an individual desires and/or names who will make those decisions. There are two common forms:

•         A living will – specifies the patient’s desire for forms of care, medications for pain, and resuscitation instructions.
•         A durable power of attorney for healthcare (not the same as a general power of attorney which gives another person authority over business affairs) designates a proxy (or primary and secondary proxies) to make decisions if (and only when) a patient is unable to express those decisions themselves.

Before writing your advance directives spend time in thought. State regulations for these documents vary so some research may be in order. (The appendices of the paper offer links to some helpful websites).

It is important in planning advance directives to think carefully about your own priorities and goals for the end of life. Is quantity of life more important to you than quality of life? Do you have goals or family events with which an aggressive treatment program would interfere?

Communication with family, proxies, one’s physician, and pastor are encouraged and it is may be wise to provide them with copies of your advance directives.

Although it is not mentioned in the paper, there are sources offering uniquely Christian forms of advance directives that serve as a witness to your faith in God’s sovereignty over your life and death (e.g. (http://www.christianliferesources.com/index.php/medical_directives) which offers state by state forms).