How to Improve your Quality of Life During a Serious Illness

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What is Palliative Care?

 Palliative care (pronounced pal-lee-uh-tiv) is an approach to medical care for chronically and seriously ill patients and is focused on improving quality of life. It is provided by a team of specialists that includes: doctors, advanced practice clinicians, physician assistants, care managers, social workers, nurses and chaplains. This team works together with a patient and their loved ones to identify stressors caused by an illness. Palliative care is provided at different levels and involves your symptom management and discussions with your healthcare team. For example, if you are seeing an oncologist and they start a medication for pain related to your cancer, this is primary palliative care. Secondary palliative care is a consultation service with specially-trained and certified team members to help with more complicated symptoms or discussions. Palliative care teams work in the clinic, in a hospital or in a home setting. The palliative care team is a consult service, which means you will still see your other doctors. The palliative care team works with all your medical providers and will help coordinate services with them.

Symptom Management

There are two parts to a palliative care consult. The first part is symptom management. This includes symptom assessment provided by the palliative care team. Some commonly-treated symptoms include pain, shortness of breath, nausea and anxiety. The goal is to control these symptoms and improve the patient’s quality of life by allowing the patient to function better. For example, patients with heart failure often experience shortness of breath when walking. This makes it difficult to get the mail or go to the grocery store. Sometimes patients even have trouble walking from room to room in their own homes. Patients commonly have the goal of remaining in their own home, which can become more and more difficult as their disease progresses. The palliative care team works together to develop a plan for the patient with steps to follow when shortness of breath occurs. The hope is that controlling shortness of breath will allow patients to regain the ability to walk longer distances, which in turn will allow them to do more when they are at home. It also improves the quality of patients’ time with their families by allowing them to not worry as much about their breathing.

Goals of Care

The second part of a palliative care consult includes discussions about a patient’s goals of care. It is important for every member of the palliative care team to learn about what a patient wants for their personal life. These hopes and goals should drive the medical plan and level of medical intervention for a disease process. An illness can change what we hope for in our personal lives. In addition, different stages of illness usually affect one’s body differently and can affect one’s goals. For example, a patient may function pretty normally with minimal symptoms in the early stages of heart failure but lose a lot of strength in later stages. These changes in health lead people to reassess who they are and what they can do. No matter the stage of illness, the medical team should know what motivates a patient to keep pursuing medical care. Some patients have very aggressive and life-prolonging goals; others are more focused on comfort or staying out of the hospital. Discussing these goals allows for personalization of medical care. The palliative care team provides a supportive environment for these discussions. The palliative care physician will provide guidance on appropriate medical interventions for a specific stage of disease, but the final decisions regarding medical treatments are left up to the patient. The palliative care team does not have an agenda, and is always respectful of what a patient and their family chooses.

When should goals of care discussions start?

It is never too early to talk about goals of care. It would be ideal for people to start having discussions with their healthcare providers and loved ones at the time of diagnosis. Different people have different reactions when bringing up goals of care discussions. These discussions often make people nervous because they feel that the medical team is trying to talk about their deaths. In reality, these discussions are more focused on how a person wants to live and what is giving their life quality. The palliative care team helps people maintain quality while living with their chronic illness.

You can read some examples of common goals and issues below:

Common medical goals

 • Cure of disease

• Prolonged life

• Improved physical function

• Decreased number of hospitalizations

• Avoiding suffering when death is approaching

Common personal goals

• Not becoming a burden on family

• Spending more time doing hobbies and household work

• Staying in own home or place of residence

• Attending specific events such as weddings, graduations and family vacations

• Maintaining control in things like driving, finances and making decisions

Common issued included in goals of care discussions

 • What to expect in the future with a specific disease process (cancer, heart failure, COPD, etc.)

• What is giving the patient life quality right now?

• What does the patient enjoy doing during the day?

• What is patient looking forward to in the future?

• Are there events or dates that are important to the patient?

• Are there activities that the patient must be able to do in order for life to feel worth living?

• What would the patient want in the event of a “code blue” situation?

• What level of medical intervention would the patient want if they were admitted to the hospital?

Documenting Goals of Care

After discussing goals of care with the patient, the palliative care physician works with the patient to translate their stated wishes into a medical plan. This is communicated with the rest of the medical team by completing advanced directives.

In the state of Utah, the most important advanced directives to complete are a Medical Power of Attorney and a POLST (Physician Order for Life Sustaining Treatment) form. A POLST form tells your medical team how intense you want your medical care to be should you become ill. A Medical Power of Attorney is a form on which a patient can choose who will speak on their behalf if they cannot speak for themselves.