Getting What You Need From Your Doctor Visit
By Danielle Stueber, MD
I have a bleeding disorder. For women with bleeding disorders, getting the diagnosis is only the first step on the road to getting good care. Education about bleeding symptoms and what to do when they happen comes next. This process can be facilitated by a strong, trusting partnership between the patient and her specialist physician, hematologist, or gynecologist. The development of an individualized treatment plan for each bleeding woman is the end-goal of the patient/physician partnership. Knowing this and knowing a few strategies to help this become a reality can significantly improve how a woman feels about her role in the partnership.
Building a Strong Partnership. As with any relationship, communication between both people in plain language is key to building a lasting foundation for the future. It is the patient's duty to ask questions when she does not understand what her physician is telling her. It is also her duty to ensure that her doctor understands what it is she needs as an individual. As each woman is different, each bleeding disorder is a little different. The doctor wants to know how the bleeding disorder is affecting her world and how it affects her sense of well-being during the process of individualizing a treatment plan.
Learning Communication Skills. Being able to communicate is not an inherited condition. It's a set of skills that a person develops with patience and practice. It depends on a few basic principles; the most important being self-understanding, and the second, self-confidence. Self-understanding leads to knowing what it is that needs to be communicated. In other words, it's critical to know what needs to be said before it can be said. For a bleeding woman, the focus of her efforts should be to identify her needs as a patient and as a woman. This self-discovery, coupled with the support of other women who bleed, will then naturally lead to an enhanced self-confidence. Self-confidence, in turn, instills the strength to say what needs to be said. As we learn our needs, we become prepared to ask specific questions to our doctors, participate in our treatment plan, and strengthen our inner selves to deal with the challenges of bleeding.
Tips to Help Strengthen the Patient/{hysician Relationship
- Identify your needs and make a list of your most important concerns for today.
- Schedule early or extra follow-up visits whenever necessary.
- Find out how your doctor prefers to communicate with you outside of your office visits (through letters, email, or telephone calls).
- Ask your questions first during your office visit.
- Be good to yourself and seek the support of other women who understand your needs.
Discovering Needs. A bleeding patient has several categories of needs. She needs to be assured that she is getting all the care that is available to her, that her doctor actively seeks the latest treatments and medical news concerning her condition, and that she can afford this care. She also has fundamental, emotional needs connected to fears about bleeding itself. Some needs center around what to do when bleeding symptoms happen, while others encompass fears about possible bleeds or the loss of the integrity of the body through bleeding. I highly encourage all women to carve out some time to reflect and write down their experiences with bleeding. It becomes especially important to write down the most pressing concerns (unless you have a rock solid memory!) before the doctor visit, maybe even while waiting to see him or her. At the very least, the list will serve as a physical reminder and token of strength during the interview as she learns to express her needs to her physician.
Bleeding Disorders Come with Worries. The question most patients have when they come to the doctor's office is "Am I going to die?" Women with bleeding disorders have often faced this question more than once. Don't be afraid to tell the physician about such worries and how bleeding symptoms affect your quality of life. Any bleeding symptom that disrupts life deserves attention even if that symptom comes in the form of worry. Significant symptoms include worrying that a woman might bleed through her pants again during a business meeting or when she is out shopping. Similarly, feelings like "I'm bleeding so much sometimes, I'm afraid I'm going to die," or "I wonder if I'm bleeding inside" should be shared with the doctor. The doctor can help sort these worries into symptoms that warrant urgent attention and those that can be safely tolerated.
What to Expect from the Specialist. Specialist doctors expect to be more involved in day-to-day issues with their patients. Specialists who take care of patients with lifelong disorders have already made the commitment to extra communication and frequent follow-up visits. Many specialists use email and telephone consultation for non-urgent concerns and welcome frequent updates about their patients in this way. Some patients feel more comfortable writing their needs and concerns down in a letter to their doctor. While it may not get a lengthy written response, the doctor will be able to use it to help individualize the treatment plan and have it as a reference for future office visits.
The Squeaky Wheel Gets the Grease. Physicians have many tools to help patients that often go underutilized. At the forefront of this chest is the experience the physician has of seeing many patients, and every patient brings unique and interesting contributions to the physician's practice. While women with bleeding disorders are rare, bleeding patients are not rare. Consider the multitude of people on aspirin and warfarin who are intentionally prevented from clotting. A good physician will use all of her knowledge from all of her patients to help the one sitting in front of her. However, unasked questions and concerns cannot be addressed. Asking questions and presenting concerns opens the door to better patient care and, more importantly, for the patient to feel that her needs are being met.
Have Courage and Seek Support. Support groups offer the combination of identifying needs and the building of self-confidence through mutual understanding. In addition to this, support groups offer emotional and spiritual healing from the often devastating complications and fears that bleeding sometimes brings and which cannot be met by the medical community. Once needs have been identified, the process of getting them taken care of can begin. Self-confidence further enhances communication skills by allowing the woman to ask questions of her doctor and to be able to listen to the things her doctor would like to share with her about her individualized treatment plan to health. The ability to communicate one's needs takes practice and time; the journey to health is lifelong. Making lists, talking openly about worries, and taking the initiative to contact the doctor are ways that many women use to strengthen their role as a partner in health.
