Quality Cancer Care

Overview

Quality cancer care is getting the best available, evidenced-based treatments, provided in a caring and respectful manner.

For most people with cancer, quality cancer care is not a guarantee. It is not just handed to you. Quality cancer care often requires some self-advocacy. If you cannot advocate for yourself, ask someone to help you.

Evidenced Based Medicine (EBM)

This is a term used to describe a process where medical decisions are made based on the best scientific evidence. It attempts to assess the quality of evidence relevant to the risks and benefits of various treatment choices (including lack of treatment).

EBM also recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods.

Don’t assume that your doctor practices EBM. Cancer treatments may be different in different locations across the country. These differences may not be based on the best evidence but rather regional practice patterns.

 

CISN Tip:

We recommend that people understand EBM and discuss this with their treatment team. Resources to help you understand EBM:

• http://www.evidencebasedhealthcare.org

Quality Cancer Care from the Patient’s Perspective

CISN believes that quality cancer care includes the following important components:

• Being fully informed about standard or usual care for your diagnosis, as well as alternative approaches and the pros and cons of each option.

• Getting a second, and possibly multiple, opinions about a treatment plan for your diagnosis.

• Being told about any clinical trials (research studies) being conducted for your diagnosis.

• Getting a written treatment plan from your doctor.

• Getting copies or easy access to copies of all your medical records.

• Having access to decision aides that assist you in evaluating your treatment plan and care.

• Receiving care from doctors and other health care providers you trust and respect and who respect you.

• Participating as a team member in the decision-making process with your doctors and other health care providers.

• Support for the emotional, mental, and spiritual aspects of your cancer journey.

Patient-Centered Care

We believe that quality cancer care includes your health care team working with you, and anyone you want to involve in your care, in a manner that provides caring, individualized information in a way that you can understand it.

What does this mean?

Not only do each of us have different genetic/ biological fingerprints, we each learn and process information in a unique way. We will describe several criteria that categorize how we each learn so you can better work with your healthcare team.

Understand your Learning Style

People learn differently. In today’s fast-paced medical practice it is difficult to tailor how information is delivered. After listing the various learning styles, we will offer tips to help you and your healthcare team negotiate through the large amount of information they will be sharing with you.

CISN Tips:

Identify how you learn best and use the following suggestions to insure that you understand the information being presented to you:

• Interrupt when you don’t understand something and ask for clarification.


• Repeat back in your own words to make sure that your understanding is correct and complete.


• Take notes or have someone with you taking notes.


• Ask for written information to take home.


• Ask if they have pictures or videos on any topic you are unclear about.


• Ask about bringing a tape recorder to important visits if that will help you.

• Do you want minimal information and prefer the doctor shares the bulk of the information with a family member or friend?
• If so, convey this to your team so they understand this and know they have your permission to speak more frankly to your designated person.

• Do you want all available information?
• If this is the case, ask for more information if it is not offered.

• You might also need to ask to have the information presented in smaller amounts over 2 or 3 visits.

Understand How You Want To Make Your Decision

People also make decisions in a variety of ways. We will list several ways other people have chosen to make their decisions. You may fit clearly into one category or be a combination of categories. The important thing is that you make the decision in a way that you are comfortable with.

• Clinician decision-making – your doctor makes the decision with your input.
• Shared decision-making - may include doctor, patient and family/friends.
• Informed decision-making - you want all information before making a decision.
• Paternalistic decision-making – someone other than you makes the decision, maybe a family member or your doctor.

CISN Tips:

• As you look for a doctor, convey your preferences to him/her to see if they are willing to comply with your wishes.

• Realize that you may only be able to handle a limited amount of information at any given time, but can request additional information at a later point.

Negotiating Overload

You might be experiencing overload in many ways, including processing new information about cancer, in your mind, emotions, and physical body.

In your conversations with your health care team, you might feel like there is too much information delivered too fast and too soon. This is called overload.

CISN Tips:

The following tips recommend ways to deal with different types of overload you may experience:

Remember you are probably in shock and are afraid. You may not be processing information as well as usual. You may find when you get home that you cannot remember the details of much of your conversation, so notes and a tape recorder will be very helpful.

• Emotional overload:
• Be gentle with yourself; stress and fear can be very difficult to handle. Get professional help if you need it.

• Do things that help you relax and/or make you happy (e.g. massage, exercise, comfort food).

• Try to schedule quiet time for yourself.

• Physical overload:
• You may find yourself tired from your treatments, stress, fear or lack of sleep. You may also be continuing to work at your job through your treatments. Try to fit in naps.


• You may need to ask for help. This may be one of the most difficult aspects of treatment for some patients.

Important Questions To Ask Your Doctor:

About the Treatment

Always go to your appointments with questions written out and be sure to check them off as they are answered.

About the Timing:

You may have more time than you think, be sure to ask these questions as well.

• Do I need the treatment right now?

• Do I have other options?

• What happens if I wait a while?

• Can I wait too long?

Quality Cancer Care from the Physician’s Perspective

The American Society of Clinical Oncology (ASCO), which is the largest organization representing doctors treating people with cancer, and the European Society for Medical Oncology (ESMO), jointly developed the following components to ensure access to, and the continuity of, quality cancer care.

We have included their core components and a link for those who would like to know more. These have a large public policy component versus ours, which are focused on what each individual will want to try to receive. www.asco.org

1. Access to Information
2. Privacy, Confidentiality, and Dignity
3. Access to Medical Records
4. Prevention Services
5. Nondiscrimination
6. Consent to Treatment and Choice
7. Multidisciplinary Cancer Care
8. Innovative Cancer Care
9. Survivorship Care Planning
10. Pain Management, Supportive, and Palliative Care

Resources / Others Working In This Area of Advocacy:

The National Breast Cancer Coalition

Another leading organization in the cancer community, the National Breast Cancer Coalition (NBCC), has been working in this area for many years and is a leader in helping to develop better guidelines for quality care.

They have developed six core values they believe constitute quality cancer care in their publication “Guide to Quality Breast Cancer Care.” Although the publication is about breast cancer, NBCC’s core values of quality cancer care extend to all types of the disease. Although these are focused towards public policy, they also apply to individual. http://www.stopbreastcancer.org/

1. ACCESS to all the care you need when you need it.
2. INFORMATION that is complete and correct.
3. CHOICE about your doctors and treatments.
4. RESPECT in all parts of your health care.
5. ACCOUNTABILITY in all parts of the health care system.
6. IMPROVEMENT in the system so breast cancer care continues to get better.

The National Coalition For Cancer Survivorship

This is the oldest survivor led cancer advocacy organization. They advocate for quality care and empowering cancer survivors. Their free Cancer Survival Toolkit can be ordered from their website at www.canceradvocacy.org.

CISN Tip:

Your medical team will be working hard to meet your needs. They are dedicated people who choose to work in a difficult field because they care about cancer patients.

Make their job easier by informing them of your needs. Become a team.