If your loved one has been diagnosed with a life-limiting condition, there are many questions that arise and important decisions to be made. Many find this process difficult, in part because they are uncomfortable communicating with medical professionals.
Some may feel intimidated by the complicated details of their loved one’s condition and treatment. Others may believe that medical staff members are too busy to answer frequent questions. And many caregivers worry that they won’t be “allowed” much input in any discussions they may attend.
In fact, nothing could be further from the truth. Open communication is key to the best care possible for your loved one – and your hospice care team understands this.
There are many aspects to your loved one’s condition and the care needed during this time. Many caregivers wonder who to contact with a specific concern.
Your hospice care team consists of different people that serve in a variety of roles and will work to answer any question that may arise. You can take comfort in the fact that every need your loved one has will be considered and addressed.
Here are the key members of your team that you should get to know:
You. As the person closest to your loved one around the clock, you are the expert on their everyday needs. You can best relay any concerns or changes in condition that may arise.
Primary care physician. Most patients who choose home hospice care remain in close contact with their personal physician. Your loved one’s doctor is usually very involved with the decision to begin hospice care and can help the transition go smoothly. Often a familiar and comforting presence, this physician can provide valuable insight into your loved one’s health history and any factors that might influence treatment decisions.
Medical director/physician. The medical director oversees your loved one’s pain and symptom management and leads the health care team. This doctor works with your personal physician and other team members to implement an overall course of action tailored to your loved one’s specific needs and concerns.
Nurses. Registered and Licensed Practical Nurses, who are specially trained in hospice care, visit patients and their caregivers at least once a week to check vital signs, administer medications and discuss symptoms and other concerns. They can also provide basic training in the use of any medical equipment such as oxygen machines and specialized beds. Your nurse is a good starting point for questions and a wonderful resource for information.
Nursing assistants. Often involved with day-to-day physical needs, nursing assistants give family caregivers respite by assisting with tasks such as bathing, grooming, changing bed linens and maintaining a safe and sanitary living area for the patient.
Specialists. Many patients who enter hospice care also wish to stay in touch with the specialists who have treated them. While curative treatment of the life-limiting illness does not continue for patients in hospice care, there may be a secondary condition, such as COPD, that must be considered in the course of symptom management. Specialists can be consulted if needed.
Grief counselors and chaplains. Trained in end-of-life counseling, these non-medical care providers are available for in-home visits and consultations do address spiritual and emotional concerns.
Medical social workers. These professionals provide support in dealing with financial and legal concerns specific to patients and caregivers who are going through the final season of life. Your social worker is trained to assist with social and psychological needs as well.
It is essential that you feel free to offer information, share opinions and ask any questions you may have -- and there are no bad, stupid or unimportant questions. Each conversation adds to your knowledge and thus your ability to provide comfort, dignity and peace to your loved one. You can be secure in the knowledge that all questions are welcome, and any information you provide is helpful.
Here are some tips for keeping the lines of communication open:
Contact info. Don’t allow inaccessibility be a hindrance to communication. Create a list of all pertinent phone numbers, email addresses and websites, and keep multiple copies available near phones and at your computer. You may find it helpful to provide this list to friends and family members who are closely involved with your loved one’s care.
Keep a notebook. It is very helpful to keep all caregiving information in one place. Having a dedicated notebook for questions and notes will prompt you to share more information and ask more questions. Take this notebook to meetings and consult it when talking to any care team member who visits your home.
Details matter. When you are describing symptoms or areas of concern, share as much specific information as you can. Time of day, length of occurrence, the kinds and amounts of food or drink that might be involved, severity of an incident – any such details will help your health care team provide the best assistance.
A scale of 1 to 10. When documenting information it is often useful to describe symptoms or experiences on a numerical scale. While not an exact measurement, such information can help you and and your team place a particular event in context and respond accordingly.
Remember, as the primary caregiver, you are a vital part of your loved one’s health care team, not just an observer with no voice or control. Your knowledge and opinions are needed every step of the way. You are one of the experts here – don’t be afraid to take your place as a welcome, valued participant.
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