State of the Heart Blog

When I began looking at colleges as a high school senior, I was full of visions of new people and new adventures, good times and blustery fall days walking around campus.  But there was one problem – What college was right for me?  Unfortunatley my family didnt make life easier for me since none of them had attended college before, and being from a family of farmers, that was O.K.  But for me, farming wasn’t an option – so I had to do a lot of research and finally at my wits end consulted the first person I should have gone to in the beginning, the school’s Guidance Counselor.  He helped me navigate the language of ‘credit hours and payment plans’.

Many times when we’re uncomfortable about a subject we try to navigate things on our own, but sometimes we should be looking for the right questions to ask instead of the right information.  That’s where your physician comes in when making healthcare decisions.  Doctors know that its hard for many of us to talk about healthcare issues – and that it’s even harder for us to talk about end of life issues, so many times they will wait on you to bring your questions to them first, before a crisis occurs.

When you discuss your concerns and choices:

• Ask your doctor to explain treatments and procedures that may seem confusing before you complete your directives.
• Talk about pain management options.
• Let your doctor know that you are completing your advance directives.
• Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
• Give your doctor a copy of your completed directives. Make sure your doctor knows the name and telephone number of your appointed healthcare agent.
• Assure your doctor that your family and your appointed healthcare agent know your wishes.

You may ask your doctor specifically:

• Will you talk openly and candidly with me and my family about my illness?
• What decisions will my family and I have to make, and what kinds of recommendations will you give to help us make these decisions?
• What will you do if I have a lot of pain or other uncomfortable symptoms?
• How will you help us find excellent professionals with special training when we need them (e.g., medical, surgical and palliative care specialists, faith leader, social workers, etc.)?
• Will you let me know if treatment stops working so that my family and I can make appropriate decisions?
• Will you still be available to me even when I am close to the end of my life?

I hope you will chose to go to your physician and address these questions, they might save a lot of grief for you and your family later in life.

When a friend of mine was in process of getting married, she asked her Mother and soon to be Mother-in-law to help with the arrangements.  In the long run, she would have been better to just assign each their own list of roles and call it a day, but the two of them disagreed on everything, one thought an outdoor wedding would be more romantic, the other thought a small church wedding was what tradition called for, and my friend was left spending her time playing negotiator between the two of them for the entire process.  We’ve all been in those awkward family disagreements, everyone seems to have their own opinion of what’s right and wrong in the situation.

Planning for your healthcare future is no different,  as we continue in this series on things you can do now to ensure your loved ones aren’t quarreling over decisions for your well-being, here are some more steps to consider taking care of in advance…

• Give your primary physician copes of written communications you have made between loved ones about your wishes.
• Prepare a more specific, written living will, and make it clear in your documents that you want your healthcare agent to resolve any uncertainties that could arise when interpreting your living will.  A way to say this to your loved ones is: “My agent should make any decisions about how to interpret or when to apply my living will.

Just like my friend’s choice to include both her Mother and Mother-in-law in all the decisions of her wedding without first asking some questions was a bad choice, sometimes having more than one loved one as a healthcare agent may cause problems for you and your family.  The following are some tough questions you might want to ask your loved ones before making them your healthcare agent:

• Will you seek out information about my illness, advance directives, your roles as caregivers, and what to expect as I near the end of life?
• Will you respect my wants and needs, even if they are different from what they used to be and if you don’t agree with my choices?
• If I cannot communicate for myself, will you advocate for me to make sure that what I want is done, even if you would not make the same choices yourself?

In honor of National Nurses Week, the following post details the mission that Nurses in Palliative and Hospice Care have committed themselves to.  The information was taken from The Hospice and Palliative Nurses Association website1.

Palliative care can be offered anywhere patients are seen in any stage of illness. Palliative care programs are seen most often in hospitals, though there are programs being developed for outpatient and other areas.

Hospice care, a part of palliative care, is provided to patients during the end stages of their disease process and is defined by Medicare regulations stating that a patient is thought to be in their last six (6) months of life. Provided in the patient’s home; regardless of whether this is a private home, a personal care home, a skilled nursing facility, correctional facility, group home, or hospice run residential facility. There are also inpatient hospice units used most frequently control symptoms so that the patient can return to their home. Hospice care is focused on the patient and those who love them wherever they reside.

Hospice Nursing:

• Regardless of the setting, hospice care is given by an interdisciplinary team. The team typically consists of RNs, LP/VNs, nursing assistants, social worker, chaplain, volunteers, and a medical director. The patient and family are also considered part of the team. Others can be brought into the team as need, for example occupational, physical, and speech therapists. All team members work toward meeting the goals of the patient and family.
• RNs who see patients outside of the hospital are responsible for assessing the patient, delivering care as needed, organizing and managing a patient’s plan of care; including scheduled visits for nursing and nursing assistants, referrals to additional services and volunteers, calls to insurances and physicians, and monitoring costs related to pharmacy, supplies, and durable medical equipment.
• As hospice nurses work in a variety of settings, there can be extensive travel, care environments that may be threatening, unpredictable hours, and variable levels of reimbursement.

Palliative Care Nursing:

• Palliative care should be a part of all care given to patients with life-limiting illnesses, whether it is integrated into routine care or part of a structured program.
• The structure of palliative care programs varies greatly based on the setting in which it is delivered. No matter the setting, palliative usually involves a team similar to hospice care.

Requirements for hospice and palliative care nurses:

• Most services require RN’s to have at least one year of acute care experience.
• Excellent assessment skills: the interdisciplinary team depends on the nurse’s assessment skills when making decisions for the plan of care.
• Clear and concise communication skills: the entire interdisciplinary team, patient, and family will need information provided accurately and succinctly.

How will you know if hospice and palliative care nursing is right for you?

• Talk to several hospices and palliative care teams/units in your area about:
  • Job requirements
  • Job description
  • Plan for orientation and mentoring
  • Opportunities for professional growth and development within the organization
  • Requirements for certification
• Talk with several nurses in the specialty
• Consider being a hospice/palliative care volunteer first
  (For More Information on Volunteering visit our Volunteer Page)

State of the Heart Hospice is committed to providing community education on Hospice and Palliative Care.

Reference
1Go to www.hpna.org to learn more about hospice and palliative nursing.
2National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. Pittsburgh, PA; 2004.

Often times when we are about to make the decisions of life we consult our family.  Sometimes the advice is good, sometimes its bad, and sometimes advice can get just down right ugly (thanks for that home-perm advice mom!)  And everyone seems to think their advice is the ‘right’ advice, especially on personal decisions like healthcare.  To help diffuse some of the disagreements that can rise up, start on the right path by naming a healthcare agent and communicating your wishes early.

Appointing a healthcare agent means that person will be ‘in charge’ of issuing out your wishes as you have stated them.  This individual can be a close friend or relative, so be certain they understand your wishes and will abide by them.  Your agent will have the legal right to make decisions for your even if close family members disagree.  This can put your agent in a difficult position if close family members express strong disagreement, making it more difficult for them to carry out your decisions.

If you foresee that your healthcare agent may encounter resistance from your family, the following steps can help:

• Communicate with family you anticipate may object to your decisions.
• Tell each family member in writing whom you have appointed to be your healthcare agent and explain why you have done so.
• Let them know that you do not wish them to be involved with decisions about your medical care and give a copy of these communications to your healthcare agent as well.

Its never easy communicating our wishes to those around us especially on sensitive issues such as healthcare.  Making your decisions known however, will help to diffuse any potential disagreements early.

The great Erma Bombeck once wrote:

“I was a “thousand points of light” long before volunteerism lighted up the sky and had an official name. I had my lights short-circuited, burned at both ends and occasionally punched out. I hang in there because generally volunteerism is a dazzling galaxy of gems that streak across the sky and illuminate the world when it falters and cannot find its way.”

This was the opening to “Being a Volunteer – A Nobel Profession”, it does justice to the committed few who invest their lives and time into organizations and causes they feel are important.  So on National Volunteer Week – State of the Heart celebrates our Hospice Volunteers, in offering continuing education to you the reader on being a part of the Hospice Mission from the Volunteer’s point of view.

State of the Heart has approximately 130 volunteers.  They volunteer in all three of the program office areas: Greenville, Portland and Coldwater.

• Volunteers must first go through an orientation to prepare them for volunteering for State of the Heart.
• The orientation is conducted by the volunteer coordinator, usually at one of the site offices.
• Once a person completes orientation, they can choose the area or service that they wish to help with. They can also choose to give as many hours as they want or can.
• Volunteers can choose from a variety of tasks:  sitting with patients while caregivers run errands, help with menial house care, help with administrative tasks in the various offices, support hospice in fund raising, public awareness and community outreach.
• Many volunteers are retired and many of these people go on lengthy vacations or leave the community for awhile. That is quite acceptable. Volunteers can resume their duties when they return to their homes.
• In 2010, State of the Heart Hospice volunteers gave over 6,000 hours to the non-profit agency, saving the agency over $90,000 in costs.
• There are 4,700 hospices nationwide and each program has volunteers who help in hospice care.

Volunteers are part of the hospice care team.  The volunteer aspect of hospice is what makes the hospice concept unique.

On April 15th, State of the Heart partnered with The Brethren Retirement Center, Gary Flinn, LLC, & Western and Southern Financial for a Your Decisions Matter Seminar.  I was over joyed to see 22 members of the community voicing their questions and finding the answers from local experts.  Thank you to all who attended!

Below is the conclusion to our 2-part series blog.  Our hope is that the information below will be useful to make your decisions known to family, friends, and your healthcare provider.

Preparing Your Advance Directives

Before you prepare your advance directives:

• Get information on the types of life-sustaining treatments that are available.
• Decide what types of treatment you would want or would not want.
• Share your end-of-life wishes and preferences with your loved ones.

Preparing your own advance directives:

• You do not need a lawyer to prepare advance directives.
• Make sure you prepare your advance directive to accurately reflect your decisions.
• Complete your state-specific advance directives.
• In most states, you can include special requests in your advance directives such as wishes about organ donation, cremation or burial.
• You also should be sure to make your physician and loved ones aware of your specific requests so appropriate referrals and arrangements can be made.
• Ask someone else to look over the documents for you to be sure that you have filled them out correctly.
• Read all of the instructions carefully to ensure that you have included all of the necessary information and that your documents are witnessed properly.

Once you have completed your advance directive you need to talk to anyone who might be involved in your healthcare decision making. This includes family members, loved ones and your healthcare providers. You want them to understand how you feel about medical treatment at the end of life.

As National Healthcare Decisions Day (NHDD) nears (April 16th is the official day) I thought it interesting to provide an excerpt from one of the articles on the NHDD website. As I sipped my morning coffee, the title of the article caused me to swallow hard and reexamine how much I really talk about end of life planning verses other ‘hot button issues’ in the world today.

“National Survey Indicates People More Likely to Talk About Drug Use and Sex than End of Life Planning.”

A new national survey indicates that Americans are more likely to talk with their children about drug use or sex than with a seriously ill parent about their end-of life wishes. The survey, completed by more than 2,300 individuals, was conducted in conjunction with the first National Healthcare Decisions Day (NHDD), April 16, 2010.

“The survey highlights the need for more attention to advance care planning, which is why National Healthcare Decisions Day is so important,” said Nathan A. Kottkamp, chair of the National Healthcare Decision Day initiative. “Americans have made such wonderful progress expanding the dialogue about drugs and sex with their children, yet we still struggle when it comes to talking about something that happens to every one of us – dying.

You know that feeling of being overwhelmed in the Grocery Store isle?  There are at least 70 different varieties of Spaghetti Sauce, some have traditional, roasted garlic, vegetable, mushrooms, herbs and cheese, it seems as if you need a guided tour just to figure out which jar to even pick up off the shelf!

Living Wills can turn your head spinning just as quickly – do you start with your Doctor or do you call a Lawyer, Are there any fees associated with establishing a Living Will?  Knowing where to begin is half the battle.  Having a living will for you and your spouse can provide your loved ones peace of mind when making decisions for your end of life care, it ensures that your wishes are followed should you be unable to voice your concerns.  The following is the first part of what we feel, is a simplified step-by-step guide on  answering your concerns and establishing a living will.

A living will allows you to document your wishes concerning medical treatments at the end of life.

Before your living will can guide medical decision-making two physicians must certify:

• You are unable to make medical decisions,
• You are in the medical condition specified in the state’s living will law (such as “terminal illness” or “permanent unconsciousness”),
• Other requirements also may apply, depending upon the state.

A medical power of attorney (or healthcare proxy) allows you to appoint a person you trust as your healthcare agent (or surrogate decision maker), who is authorized to make medical decisions on your behalf.

Before a medical power of attorney goes into effect a person’s physician must conclude that they are unable to make their own medical decisions. In addition:

• If a person regains the ability to make decisions, the agent cannot continue to act on the person’s behalf.
• Many states have additional requirements that apply only to decisions about life-sustaining medical treatments.
• For example, before your agent can refuse a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor’s assessment that you are incapable of making treatment decisions.

What Else Do I Need to Know?

• Advance directives are legally valid throughout the United States. While you do not need a lawyer to fill out an advance directive, your advance directive becomes legally valid as soon as you sign them in front of the required witnesses. The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state’s law.   Also, advance directives can have different titles in different states.
• Emergency medical technicians cannot honor living wills or medical powers of attorney. Once emergency personnel have been called, they must do what is necessary to stabilize a person for transfer to a hospital, both from accident sites and from a home or other facility. After a physician fully evaluates the person’s condition and determines the underlying conditions, advance directives can be implemented.
• One state’s advance directive does not always work in another state. Some states do honor advance directives from another state; others will honor out-of-state advance directives as long as they are similar to the state’s own law; and some states do not have an answer to this question. The best solution is if you spend a significant amount of time in more than one state, you should complete the advance directives for all the states you spend a significant amount of time in.
• Advance directives do not expire. An advance directive remains in effect until you change it. If you complete a new advance directive, it invalidates the previous one.
• You should review your advance directives periodically to ensure that they still reflect your wishes. If you want to change anything in an advance directive once you have completed it, you should complete a whole new document.

You may be caring for someone who needs assistance with day-to-day chores and tasks, but can still make their own decisions about personal matters such as financial affairs, medical care, and household issues.

Knowing and understanding your loved one’s values and wishes will be important as you become responsible for making decisions for them. Advance care planning is the process that allows you to make decisions about the care you would want to receive if you happen to become unable to speak for yourself. Advance directives are tools that enable an individual to write down their preferences on a legal form and appoint someone to speak for them if they are no longer able. A living will, healthcare power of attorney, financial power of attorney, and a plan for funeral arrangements can help ensure peace of mind for your loved one and for you, the caregiver.

For more information visit www.CaringInfo.org.  Caring Info is a part of Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), it is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.