Welcome to the YSC Ask The Expert series. We ask a leader in the field to respond to YSC constituents' questions on a specific topic during an Ask the Expert residency. To view previous Ask the Expert features, please visit the Ask the Expert Archive Page. Email your questions for our expert to ask-the-expert@youngsurvival.org

Meet our expert — Doug Cluxton

Doug Cluxton, MA, LPC, is Vice President for Education and Development at the Ohio Hospice and Palliative Care Organization in Columbus, Ohio. He has more than twenty years' experience offering counseling in a variety of health care settings including 15 years in direct service to hospice patients and families. The specific focus of his work has been providing care, support, and education to persons who are facing serious, chronic, and/or life-limiting illnesses. He has presented educational workshops to healthcare professionals and consumers on local, state, and national levels.

Doug graduated from the Ohio State University with a BA in Psychology in 1973. He completed a Masters degree in Counseling at Ashland Seminary in 1981, and is a Licensed Professional Counselor. Currently, Doug is focusing on professional and community education and program development at the Ohio Hospice & Palliative Care Organization.

Question Five:

What is advance care planning and what are advance directives? When I was in the hospital recently, they asked me if I had advance directives. I said "no" and that I wasn't interested, but I wonder what they were talking about.

Doug Cluxton:

Advance Directives are documents that outline what kind of care a person would want at the end of life. They are available for adults to complete in all 50 states. Most states call these documents Living Wills and Health Care Powers of Attorney. The Living Will is not about finances or material possessions. (A "last will and testament" addresses those issues.) The Living Will specifies whether one would want to be on life support systems if they were terminally ill and unable to express themselves or were permanently unconscious. It allows a person to make choices and outline them so that they are carried out by the medical team.

A Health Care Power of Attorney is a document that allows you to name another person whom you trust to make health care decisions for you anytime you are unable to make these decisions for yourself. Most states allow any adult, 18 years of age and older, to complete these documents. These are important for everyone to consider having in order to safeguard your medical treatment wishes. For more information on this subject, go to www.caringinfo.org

Advance care planning is the process of considering your care options, making your preferences known, and consulting with your health care team. The documents can assist this process, but the conversation is really the most important part.

Question Four:

I was first diagnosed eight years ago and did very well following surgery and chemotherapy until about two years ago when I had a recurrence. Initially, I responded great to the treatment, but over the last six months, things have started to change and I'm not doing well at all. My oncologist has started talking about future treatment options if the current plan isn't effective. She even mentioned hospice as one alternative to think about. Do I have to stop my treatments to receive hospice care?

Doug Cluxton:

It is important to point out that hospice is care specifically designed for people who are experiencing changes in their condition where it is likely there may be months, rather than years, to realistically expect to survive. However, hospices regularly discharge patients from their care because those patients have stabilized and no longer appear to have a limited life-expectancy. These discharged patients often return to active, aggressive and curative treatments and later may return to hospice care if and when those services are more appropriate in the future. Many hospices will permit patients to continue their present course of treatment when they are admitted to hospice if that treatment is palliative in focus and is helping to manage symptoms. It may be helpful to arrange for a hospice program to visit you to explain their services more fully. Individuals and family members can initiate these calls. You do not have to wait for a referral to gather information.

Question Three:

Do you consider palliative care to include things like pain relief for those without active cancer? When I have looked up the definition, I think it should; but what do you think? I was in a program at a cancer institute, but was dropped because I did not have active cancer and they changed their system such that only those with active cancer would be treated. I have been relegated to trying to find a pain doctor, but have been having problems locating someone that is familiar with neuropathy and surgical site pain secondary to cancer treatment. Most are set up to deal with things such as chronic back pain or something more localized like that. What you recommend for someone like me; who should I be going to for care?

Doug Cluxton:

Ideally, palliative care would be available to those without active cancer as it is care that focuses on the needs of the person at any stage of illness. With palliative care's focus on symptom control and pain management, it is appropriate to seek this type of care when the disease may be in remission but may still have secondary effects and lingering symptoms like neuropathy or lymphedema. In some palliative care programs, there is an option for continuing care in an outpatient clinic. This is not true of all programs. In the absence of this option, you may want to consider attending a support group where other suggestions might be offered. In many states, there are pain control and advocacy programs. The following websites may be helpful:

American Pain Foundation at www.painfoundation.org.

Alliance of State Pain Initiatives at www.aspi.wisc.edu.

Question Two:

What makes a good pain and palliative care program? What can I expect and at what points do I ask to be referred to them?

Doug Cluxton:

The main point I want to emphasize here is that a palliative care program is more than a pain service. If I were considering a palliative care referral, I would want to explore who is on their team. What professional disciplines are represented on their service? For example, if I am a patient experiencing a serious illness and I'm suffering emotionally and I'm concerned about my children's coping with my disease, I would want to be sure that the team has a social worker, chaplain or other counselor who might assist me and my children with these concerns. This is just one example.

While palliative care can be useful and helpful at any stage of illness, it is often triggered by a concern like pain or another distressing symptom that is proving difficult to manage. People might also seek this service when they want to begin making plans for care and treatment in the face of advancing illness as they consider the larger picture and concerns. Not all hospitals and other care centers have palliative care services but more and more are developing them. The number of hospital-based palliative care programs has tripled in recent years to more than 1200. One in five hospitals offers palliative care and US News & World Report now includes palliative care in its criteria for "America's Best Hospitals."

Question One:

What is palliative care? Is it just hospice and/or end of life issues? Does it have anything to do with someone who is "living" with the disease?

Doug Cluxton:

I am so glad that this question was asked because it gives me an opportunity to dispel myths and common misunderstandings. In fact, palliative care is very appropriate at any stage of illness because it specializes in relieving pain and managing distressing symptoms. For example, some people who receive a serious diagnosis like multiple sclerosis or kidney disease may get much needed support and help from an early referral to a palliative care service. Hospice is indeed a type of palliative care at the end of life when a person's life expectancy is limited and he or she is no longer seeking treatment intended to bring about a cure. Palliative care can be provided along with treatment that is intended to lead to a cure.

One way to think of this is simply that all hospice care is palliative, but not all palliative care is hospice care. Palliative care is meant to bring relief from pain and other symptoms and to offer support and comfort to individuals experiencing serious illness. One of its hallmarks is to view the person in a holistic manner, i.e. seeing the individual as not only a physical being, but also as a person with emotional, social, and spiritual concerns as well. One way palliative care services ensure this is to have other professionals on the team in addition to physicians and nurses. Examples of these professionals include social workers, counselors, spiritual care, and various therapists. People who have received palliative care often remark that these services have improved their quality of life and have helped them live with their disease more effectively. For more information, please check out the following websites: National Hospice & Palliative Care Organization at www.nhpco.org and Center to Advance Palliative Care's www.getpalliativecare.org This last website highlights palliative care programs by state and city.

View previous Ask the Expert features on the Ask the Expert Archive Page.