If you are reading this, you are likely a patient of Dr. Hacker or one of his colleagues at the Community Palliative Medicine Associates. This article gives you and your “supporters” (family and friends who are playing a role in your care) an introduction to why we are involved and what to expect from us.

How you came to be under our care:

To be admitted to Dr. Hacker’s care as part of Community Palliative Medicine Associates, you would have been referred by your doctor (family doctor or specialist) or your Home Care Coordinator. You would have had to meet the criteria of our group, which means that you:

• are unable to attend appointments outside your home,
• have an illness that is progressing and causing symptoms that need active management that require specialized care from a palliative care physician,
• want to focus on quality of life and treating the symptoms of your disease more than undergoing investigations and treatments aimed at altering the course of the disease, and
• have palliative care nurses visiting your home through Home Care.

Why is this a good thing?

Some patients feel that being referred to palliative care is an admission of defeat or a “giving up on them” by their other doctors. Patients who have been followed for a long time by their other doctors can feel betrayed or abandoned. Sometimes this is just a feeling, or sometimes doctors use the phrase “there is nothing more to do” when transitioning to palliative care.

In fact, palliative care is active treatment that improves people’s quality of life and can even lengthen their life in some situations. That your doctor has recognized that this is a good time for you to receive the benefits of palliative care is a good thing for you and your family. It means that the focus of your care will be on what is important to you. Having those things take priority will give you a better sense of control and a true sense of partnership with your treating team.

What can I expect now?

When you first come under our care, you will have an initial visit which can be quite tiring. We are trying to get to know you, your family and supporters, and your priorities while determining what immediate issues we need to address now. Subsequent visits will address symptoms, educate you on what to expect as your disease progresses, and plan how and where your care will be organized as things change over time. It is important that your closest supporters, (family, friends), are part of this conversation, even if they can only join over the phone or video. Almost all of our visits are done in person at your home.

Much information will come your way (which is part of why I created the Palliative Care Companion). Refer back to this knowledge base to refresh your memory.

It is helpful for you or your supporters to take notes as needed. Between visits, write down your questions so that everything gets addressed. If you have a question or concern that impacts your comfort or quality of life, don’t hesitate to use the contact information given to you to contact Dr. Hacker or his colleagues when needed.

Some of the conversations that we need to have can be difficult. They address issues that may not have been spoken out loud, such as what will happen to you as your disease progresses, what the normal dying process looks like, and what kind of equipment and support you might need as time goes on. While it is normal to be anxious about these conversations, be assured that we make this as comfortable an experience as possible and the vast majority of patients are relieved to have had them. Removing the mystery of what happens during advanced illness can lift a lot of anxiety and ease many unnecessary fears created by Hollywood and common misconceptions.

You will be seen regularly at home. The frequency of visits will depend on how quickly things are changing and what symptoms and issues we are managing. The nature of our practice is that we look after a small number of patients at any one time (less than 25), so our schedule is reasonably flexible and can absorb unexpected visits or reschedulings. We also provide 24/7/365 on-call coverage directly with one of the doctors on our team.

We work closely with Home and Community Care Support Services (HCCSS or “Home Care”) and the agencies they contract with to provide in-home care (Bayshore, Carefor, St. Elizabeth, etc.). Working with a team that includes a Care Coordinator, nurses, PSWs, Occupational Therapists, and others means each team member has a specific role. As a result, you will learn much about what all the team members do, and your supporters will gain skills and knowledge in providing care.

In conclusion:

Palliative care is not just about managing symptoms but also about creating the best quality of life possible. You will find that your palliative care professionals have a positive and optimistic focus. Our team is here to listen, provide education and help you and the circle of support around you make decisions that are right for you. We will do our best to provide an affirming and compassionate environment for you and your supporters as you navigate this difficult time.