Studies Differ on Patient Advance Care Planning Wishes

A study finds patients with chronic kidney disease feel their advance care planning needs are not being met. From MedPage Today:

Nearly half of patients with advanced chronic disease said they would like to make advance care plans with their nephrologist, but only 10% had actually discussed it, Sara N. Davison, MD, of the University of Alberta in Edmonton, found.

They had done no better with their family doctors, Davison wrote online in the Clinical Journal of the American Society of Nephrology, reporting the results of her survey of 584 patients. Only 8% of patients reported talking about end-of-life issues with family physicians, but 39% indicated that they wanted such discussions.

Most patients also said they didn't know much about the palliative care options or how their final weeks of life would progress. Yet they expressed strong desires for more information and involvement in decision-making.

"Communication of prognosis and discussions related to planning for future death are lacking in the routine care of chronic kidney disease patients," Davison wrote.

While this study points to patients wanting more discussion to take place with their doctors, a study in the Journal of Clinical Oncology examining attitudes among cancer patients indicates more reticence about discussing advance care planning with their oncologists. From Pallimed:

. . .The data come from a prospective study involving all patients consecutively admitted to an academic hospital's inpatient oncology service over several months; patients (N=75, mean age 51 years, 23% African American; the majority had hematologic malignancies) were interviewed about AD [Advance Directive] completion and preferences.

41% of patients reported having completed an AD (all were given a description of what was meant by an AD); in multivariate analysis older age was the only predictor of AD completion. 75% of the patients had discussed an AD with someone - mostly family (23 patients reported a discussion with a physician). Only 5 patients reported a discussion about ADs with their oncologist. When they asked patients if they would like to discuss ADs with their oncologist, only 23% said they would (this is similar to the finding in the study 10 years ago). When, however, they asked patients which, of all their doctors, they would prefer to discuss ADs, a plurality said their oncologist (48%). That is, if they have to do it, they'd prefer their oncologist. Notably the vast majority of patients (87%) thought that physicians admitting a patient to the hospital should ask about ADs (they indicated this was not only ok but an important thing to do). Thus, the title of their article, and this post - 'Paradoxes in ACP....'

(They also asked patients about knowledge of hospice care and palliative care. 21% of patients reported knowledge of 'palliative care' vs. 81% for 'hospice care,' and hardly anyone said they knew anyone who had received palliative care.)

Basically these patients, most of whom did not have an AD, weren't particularly interested in talking about them with doctors (oncologist included), while recognizing that when you are admitted/acutely ill it's good to bring it up with a stranger...but that if they had to discuss them with a doctor most preferred their oncologist. This is summarized by the authors as: "while most patients would not like to discuss ADs with their oncologist, they would prefer to discuss them with their oncologist."

Article originally posted on the Hospice and Caregiving Blog by the Hospice Foundation of America.

Hospice Care in the Nursing Home Offers Benefits to Residents at End of Life

(Alexandria, Va) – Researchers at the Harvard Medical School, Department of Health Policy have published a review article of hospice care in the nursing home and found a number of benefits indicating that greater availability of hospice holds promise in the nursing home setting.  

Key findings reported in an article published in the September 2009 issue of the Journal of Pain and Symptom Management found:

• Hospice in nursing homes can provide high quality end-of-life care and offers benefits such as reduced hospitalizations and improved pain management.
• The provision of hospice care in nursing homes has been shown to have positive effects on non-hospice residents, suggesting indirect benefits on nursing home clinical practices.
• Hospice is relatively underutilized among nursing home residents at the end of life.

While most hospice care in the U.S. is provided in the home, the use of hospice in nursing homes has risen in recent years; growth that has coincided with increased utilization of hospice care more generally.

The National Hospice and Palliative Care Organization reports that more than 1.4 million Americans receive care from the nation’s hospice providers annually with 22.8 percent residing in a nursing home. Yet, only six percent of nursing home residents in the U.S. currently elect the hospice benefit, even though nearly one-in-four deaths in the U.S. occur in a nursing home.

“More and more hospices are successfully caring for people residing in nursing homes. This growth reflects the increased provision of quality care for dying persons who are not in the traditional ‘home’ setting. For many people, the nursing home is their home and they deserve the compassionate, quality care that hospice and palliative care providers are trained to deliver,” said J. Donald Schumacher, NHPCO president and CEO. “This literature review points out many positive benefits of hospice in the nursing home and it reminds us all of the importance of caring for this population.”

Authors of the study found that nursing home hospice patients received the same high-quality care as those hospice patients living in their own homes.

Compared to similar residents not enrolled in hospice, previous studies reviewed by the researchers found nursing home hospice patients were more likely to be assessed for pain, twice as likely to receive daily treatment for pain, and more likely to receive pain management in accordance with clinical guidelines. They were also less likely to require hospitalization in the final 30 days of life.

The importance of communication and coordination between the hospice provider and the nursing home staff as well as the need for more education on end-of-life care among professionals was another point clearly shown in the literature reviewed.

“Hospice providers recognize the need for ongoing outreach and awareness building, both among nursing home professionals as well as members of the public who may need end-of-life care,” Schumacher remarked. “For example, the misconception that hospice might hasten a patient’s death is something we in our field must continually clarify. In fact, some studies have shown that hospice patients live, on average, longer than similar patients who do not opt for hospice care.”

The article was written by David G. Stevenson, PhD, and Jeffrey S. Bramson, BA, of the Harvard Medical School, Department of Health Policy. Support for this research was provided by NHPCO.

Permission to Grieve

The key to grieving in a healthy manner is one word: “Permission”

Give yourself permission to grieve. This is not the time to be strong for others; it is a time to simply survive. Below are a few suggestions that we use in the hospice’s grief recovery program to assist our families:

1) Write down your fears & be brutally honest. When we are able to “see” our fears, we can

more effectively deal with them.

2) Decide if you do or do not want to be alone and stick to your decision. Let people know

what your preference is and do not send mixed signals to them.

3) Do not be afraid to express your emotions; people are expecting you to cry… don’t

disappoint them.

4) Structure your time. Daily life can be demanding (i.e. cleaning, shopping, cooking, etc.)

even if you have not experienced a loss.

5) Ask others to assist you as much as necessary. Remember, they too are grieving

your/their loss. By allowing them to help, you are providing them an outlet for their grief.

Should you find your grief getting the best of you, please feel free to call me at 678-583-0717.

Don Daly

Chaplain/ Bereavement Coordinator

Sacred Journey Hospice, www.sacredjourneyhospice.com

Our first blog post!

Welcome to the inaugural edition of the Sacred Journey Hospice blog. All of us here are very excited with this new format that allows an open line of communication between health care professionals, care givers, families, friends and even patients themselves.

My hope is that everyone involved in, or anticipating the need to care for a loved one in the future, will take advantage of this forum, and all it has to offer. I envision this as a space for information, questions, answers, suggestions and yes, even occasional venting of frustrations when necessary.

Let me begin by first saying that our mission here at Sacred Journey Hospice, is to provide caring and compassionate end of life care, to both patients and their families at this very tenuous time in their lives. We feel it is a privilege to be allowed to help care for you and your loved ones, and we constantly strive to provide all parties involved, with both medical and emotional support.

We feel so strongly about our devotion to you and your care, we have created the following list of things we are completely committed to provide to each and every patient and family.

The Ten Commitments
1 : To provide a safe and caring environment at all times;
2 : To treat each patient as an individual with compassion and dignity;
3 : To provide for your comfort at all times;
4 : To both anticipate and respond to your needs;
5 : To include YOU in our care planning efforts;
6 : To listen to your concerns and respond both timely and appropriately;
7 : To assist with your spiritual needs;
8 : To alleviate as much stress as possible during this difficult time;
9 : To communicate changes in patient status to family/caregivers;
10: To provide professional aftercare services to family, friends and caregivers.

Finally, I would like to invite anyone who wishes, the opportunity to participate in this ongoing forum. My sincere hope is that you all find it very helpful and resourceful as we move forward in this process together.

Sincerely,

Lauretta Nester, MS, PA-C
Administrator/CEO
Sacred Journey Hospice, Inc.