One of the first things that comes up when we initially meet with a patient and their family to discuss Visiting Nurse services is the individual plan of care. In our hospice program we deal exclusively with patients who are nearing the last months/weeks/days of their lives, and we talk with them about what they envision for the time they have remaining.
As we discuss their goals of care, they often talk about not wanting to be in pain or suffering from other distressing symptoms. They want to be able to spend quality time with friends and family, doing those things that are important to them.
They may share their worries about dying alone or their fears about the dying process itself. Some patients come to us more prepared to have these types of conversations, while others are not able to talk about it at all. The primary factor in the ease with which this conversation unfolds is the amount of advance care planning that has taken place before we ever meet them.
Those who have taken the time to engage their families in discussion about their wishes and choices for future health care are better prepared for these conversations. Some of them will have expressed their wishes in an advance directive through a document such as a living will and/or may have appointed a health care representative to assure their wishes are made known when they can no longer speak for themselves.
I wish I could say the majority of the patients who enter our agency’s programs are prepared and have stated their wishes and even documented this in an advance directive, but unfortunately that is usually not the case.
It is human nature to put off the inevitable as we go about the business of living our lives. Often, by the time the patient elects hospice or palliative care, they are very ill and unable to have those types of conversations. It is often left for their family to sort it out and make sure everyone is on the same page.
We do our best to work through the process, addressing it on the first visit and engaging members of the hospice and palliative care team to follow through and help develop a plan that meets the goals of care that the patient would choose.
I am pleased to report the Indiana legislature recently adopted a new advance care planning document, a physician’s order called POST: Physician Orders for Scope of Treatment, which became effective in July 2013.
The POST – printed on bright pink paper – is designed to indicate the patient’s preferences for treatment near the end of life such as code status (whether or not to initiate CPR), IV fluids, tube feedings, antibiotics, etc.
The POST is different from other advance directives in that: 1. It only applies to patients who are in an advanced state of progressive illness (generally a prognosis of one year or less); 2. Whereas most advance directives are preferences expressed by any adult, POST is an actual physician’s order; and 3. Most advance directives are limited to the location in which they were created, but POST is portable – it is a physician’s order that follows the patient across all health care settings. It also allows for appointment of a health care representative on the POST form itself.
Visiting Nurse has been involved over the past year in the development of a steering committee – Northeast Indiana Coalition for Advance Care Planning – which includes representatives from various health care and other related organizations serving northeast Indiana.
The committee members are working together to educate physicians and other health care providers about the POST form and how to use it. NICA will be providing specialized training later this spring for facilitators and instructors who will be equipped to spread the word about POST to relevant organizations and the community in general.
Eventually, NICA will be taking a broader view and setting the stage for improving advance care planning inside and outside of clinical settings, emphasizing the importance of having discussions with your physician about your wishes, and how, when and where POST and other advance care planning tools can be used.
At Visiting Nurse, we have seen firsthand how difficult it is when a patient is not given opportunity to discuss their wishes or is too ill to be able to do so. We have also seen the effect this has on family members – each of whom is trying to do their best to assure their loved one receives the care they would have wanted but many times disagreeing among themselves about just what their loved one’s care should be.
The POST form addresses these concerns and is an excellent tool to help patients, families and those who care for the seriously ill understand what the individual’s choices truly are.
POST fits very well within the mission of Visiting Nurse to provide compassionate care to alleviate suffering and ensure quality of life for those affected by serious illness. We thank our community for the continued support of Visiting Nurse and its mission.
If you have questions about POST and how it might apply to you or a loved one, feel free to contact the NICA advance care planning coordinator, Katie Houghman, at 260-435-3204 or by e-mail at firstname.lastname@example.org. There is also information about POST on the Indiana State Department of Health website: www.in.gov/isdh/25880.htm and at The Respect Center website sponsored by IUPUI: www.iupui.edu/~irespect/POST.html.