Palliative care has experienced a rebirth: it is now a life-focused approach to cancer care that’s changing both how doctors and patients deal with the disease. Historically, palliative care was associated with relieving pain and discomfort for the dying. Today, palliative care is considered an integral part of cancer care, mainly because people are living longer, more productive lives with cancer as a chronic illness.
Palliative comes from the word “palliate,” which means to make comfortable by treating and relieving the symptoms of an illness. For both cancer patients and families, palliative care is often a key to maintaining the highest possible quality of life.
When you are facing a serious illness like oral cancer, you need relief. Relief from pain. Relief from other symptoms, such as fatigue, nausea, loss of appetite and shortness of breath. Relief from stress. You need to better understand your condition and choices for care. You need to improve your ability to tolerate medical treatments. And, you and your family need to be able to carry on everyday life.
In short, you want to feel better, feel supported and have more control over your care. This is what palliative care can do for you. It is important that you understand that palliative care is an individual choice for each patient depending on your specific goals. There is no one answer for everyone. The goal of palliative care is to relieve suffering a provide the best possible quality of life for people facing the pain, symptoms and stresses of serious illness.
Palliative Care Facts
- Some patients receive palliative care and continue to pursue other life-prolonging programs, including chemotherapy, radiation and surgery. General physicians are typically key members of the palliative care team and can coordinate services and participate in care. Palliative care is offered in a wide range of locations, including doctors’ offices, clinics, long-term care settings and at home. Many medical institutions have begun to develop palliative care programs on site to augment their existing services. Medical organizations and professionals recognize palliative care as not only one of the newest disciplines in the health care field, but as a medical specialty. Professionals who specialize in palliative medicine receive special training and certification.
- Several organizations, such as the American Academy of Hospice and Palliative Medicine, provide referrals to physicians who specialize in palliative care.
How it works?
When the Palliative Care Consult Service is asked to see a hospitalized patient, the patient's medical records are thoroughly reviewed to ensure a good understanding of the patient's medical condition and prognosis. After this review the palliative care physician and nurse meet with the patient and family to identify care needs. The palliative care team then makes recommendations to the primary physicians and provides ongoing consultation while the patient is in the hospital. The Palliative Care Consult Service often assists with dismissal planning, which may include referral to hospice care, skilled nursing care or home health care.
Palliative care can begin as soon as curative treatment is no longer an option no matter how much longer the person is expected to live. A palliative care specialist should be able to anticipate the patient’s needs as the disease and progresses with their knowledge of the usual outcomes for the various types of cancer and put the proper supports in place. They should be easy for you to reach when needed. You need to make your medical team aware of any and all symptoms so that they can be dealt with.
How to get palliative care?
The first step is to talk to your own doctor. Most of the time, you have to ask your doctor for a palliative care referral to get palliative care services. Whether you are in the hospital or at home, a palliative care team can help you. Following are some tips to help you talk to your doctor:
- Tell your doctor you are considering palliative care and ask what palliative services are available in your area.
- Ask your doctor to explain your illness as well as past, current and future treatments and procedures.
- Explain to your doctor what quality of life means to you. This list may include being able to spend time with loved ones, having pain and other distressing symptoms aggressively treated, the ability to make your own decisions for care and your preferred location of treatments (home vs. hospital).
- Be sure your doctor is aware of any personal, religious, or cultural beliefs, values or practices that are important to consider in your care and treatment decisions.
- Tell your doctor what curative treatments you may or may not want, such as resuscitation if your heart were to stop, being placed on a mechanical ventilator if your lungs were to fail, undergoing dialysis if your kidneys were to fail, and artificial nutrition by a feeding tube if you were unable to eat.
- If you have completed a living will or health care proxy, be sure to inform your doctor and provide him or her with a copy.
- If you are suffering with pain and other symptoms due to a serious illness, ask your doctor for a palliative care referral.
Where do patients receive palliative care?
Cancer centers and hospitals often have palliative care specialists on staff. They may also have a palliative care team that monitors and attends to patient and family needs. Cancer centers may also have programs or clinics that address specific palliative care issues, such as lymphedema, pain management, sexual functioning or psychosocial issues. A patient may also receive palliative care at home, either under a physician’s care or through hospice or at a facility that offers long-term care.
Who pays for palliative care?
Palliative care services are usually covered by health insurance. Medicare and Medicaid also pay for palliative care, depending on the situation. If patients do not have health insurance or are unsure about their coverage, they should check with a social worker on their hospital’s financial counselor.
If a person accepts palliative care, does it mean he or she won’t get cancer treatment?
No. Palliative care is given in addition to cancer treatment. However, when a patient reaches a point at which treatment to destroy the cancer is no longer warranted, palliative care becomes the total focus of care. It will continue to be given to alleviate the symptoms and emotional issues of cancer. Palliative care providers can help ease the transition to end-of-life care.
Can a family receive palliative care?
Yes. Family members are an important part of cancer care, and, like the patient, they have a number of changing needs. It’s common for family members to become overwhelmed by the extra responsibilities placed upon them. Many find it difficult to care for a relative who is ill while trying to handle other obligations, such as work and caring for other family members. Other issues can add to the stress, including uncertainty about how to help their loved one with medical situations, inadequate social support and emotions such as worry and fear. These challenges can compromise their own health. Palliative care can help families and friends cope with these issues and give them the support they need.
How do people talk about palliative care or decide what they need?
Patients and their loved ones should ask their doctor about palliative care. In addition to discussing their needs for symptom relief and emotional support, patients and their families should consider the amount of communication they need. What people want to know about his or her diagnosis and care varies with each person. It’s important for patients to tell their doctor about what they want to know, how much information they want and when they want to receive it.
What is the difference between palliative care and hospice?
Although hospice care has the same principles of comfort and support, palliative care is offered earlier in the disease process. As noted above, a person’s cancer treatment continues to be administered and assessed while he or she is receiving palliative care. Hospice care is a form of palliative care that is given to a person when cancer therapies are no longer controlling the disease. It focuses on caring, not curing. When a person has a terminal diagnosis (usually defined as having a life expectancy of 6 months or less) and is approaching the end of life, he or she might be eligible to receive hospice care.
Usually a team of experts, including palliative care doctors, nurses and social workers provides this care. Chaplains, massage therapists, pharmacists, nutritionists and others may also be part of the palliative care team.
The palliative care team of specialists spends as much time necessary with you and your family. The team supports you and your family every step of the way, not only by controlling your symptoms, but also by helping you to understand your treatment options and goals. Working together with your own doctor to provide an extra layer of support, the palliative care team provides:
- Time for close communication
- Expert management of pain and other symptoms
- Help navigating the healthcare system
- Guidance with difficult and complex treatment choices
- Emotional and spiritual support for you and your family
What should you ask when you meet with the palliative care team?
- What can I expect from palliative care?
- Where will my care be provided (e.g., in the hospital, nursing home, hospice)?
- Who will be part of the palliative care team?
- What are your recommendations for my care?
- What decisions need to be made by either my family or me?
- Will you be able to help explain the issues involved in making these decisions?
- Will you communicate to be involved in my care when I am in the hospital (if currently at home) or when I am discharged from the hospital (if currently in the hospital)
- How will you interact and communicate with my other doctors?
- What will you do if I experience severe pain or uncomfortable symptoms?
- What support will you provide to my family and/or caregivers?
- Can you explain the difference between hospice and palliative care
- Will you still be available to me throughout my illness?
- What resources do you recommend for me to learn more about palliative care?
Role of Palliative Care Nurses
As cancer survival increases, palliative care nurses will care for more who are technically cured of their malignancy, but have severe chronic pain that affects all aspects of quality of life. Palliative care nurses are uniquely qualified to care for these patients because of their expertise in assessment and management of complex pain syndromes. Nurses specially trained in palliative care also understand that illness affects family members and that they need to be a focus of care along with the patient.
Pain experienced by those with cancer is undergoing a shift in character from primarily tumor-related to the addition of treatment-related pain syndromes. As the benefits of palliative care for all patients, not just the dying, become widely understood, nurses in this area will likely see more cancer patients with persistent treatment-related pain syndromes. Awareness of these syndromes allows palliative care nurses to use their existing pain management skills to this evolving phenomenon.
Caring for a loved one with a serious illness can be exhausting and challenging- and may be one of the most rewarding things you’ll ever do. You might not know what to expect of just what to do, but you should be aware that there is help available to you. As you determine a care giving plan, take advantage of the help and consider the following:
- Learn about your loved one’s illness. Knowing about the disease itself, as well as your loved one’s prognosis, can help you anticipate your loved one’s needs and make you feel more capable and in control. Have the name and contact information of your loved one’s doctors and healthcare team handy so you can call when you have questions.
- Focus on your relationships with your loved one. You’ll have a lot of time together, so make it quality time as much as possible. Take one day at a time. Tell stories, talk about hopes and dreams.
- Talk to your employer about your situation. Some companies offer-reduced hours of flexible schedules; of you may wish to take a temporary leave. If you qualify, the Family and Medical Leave Act (FLMA) allows you to take up to 12 weeks of unpaid leave and retain your job. Learn more by visiting the U.S. Department of Labor's information pages on FMLA.
Benefits of Palliative Care
You may worry that agreeing to palliative care means giving up hope for a cure. That is not the case at all. In fact, palliative care can help you cope with aggressive treatments by getting your pain and symptoms under control to help you fight the disease. For instance, one study found patients with cancer who receive palliative care were more likely to complete chemotherapy treatment and reported a higher quality of life than those who didn’t receive palliative care.
Palliative care helps you achieve quality of life as you define it. The palliative doctor and team explain the pros and cons of your treatment options so you can make informed decisions about how you want to manage your illness and symptoms, and live your life. They also can provide emotional and spiritual support and resources. In other words, they are concerned about you, not just your illness.
Role of the Patient and Family in the Palliative Care Team
The patient and/or their family are considered the “head” of the palliative care team. Most of the day-to-day care falls to the patient of their loved ones. This puts you, as the patient or loved one, in a position to be the most familiar with progress of the illness, the signs and symptoms of pain or discomfort, and to know what specific needs are.
You are responsible for expressing your needs to the other members of the palliative care team during visits with other forms of communication. You will work with the case manager nurse to devise a schedule of visits that works well for everyone involved. It’s important that you keep the case manager nurse informed of any changes in condition and of any problems that may arise. You may also be asked to keep a log of medications and/or symptoms that will help the nurse when she is doing her assessments.
It’s your right to decide against certain services. If yours is a family that has several members pitching in to provide care, you may decide that you don’t want a home health aide to visit. If yours is a family who is very involved in a church and is surrounded by clergy and church members, you may choose to decline the services of a chaplain. You have the right to change your mind at any time you can initiate these services later on. You know better than anyone what your particular needs are and it’s your job to make them known.
Your role as part of the palliative care team is a very important one that should not be taken lightly. It is important that you gather as much information as you can to provide safe and competent care. Read all the literature that your health care providers give you.
Be sure you understand all the medications that are prescribed, including what the brand names and generic names are, what they are used for, and how to give them. It is also important to know the most common side effects of each one so you can recognize them if they occur. It’s difficult to remember all the information that’s thrown at you so you may want to consider writing everything down. Find a method that works for you so you will have a point of reference when you need one. If there is anything you don’t understand, it’s important to ask your case manager nurse for clarification.
Working together with the other members of the palliative care team will help you feel confident in the care you are receiving. As with every health care decision, its important to be as informed and involved as possible to ensure the best care possible.
Palliative Care is Increasing
Results of an analysis conducted by the Center to Advance Care and the National Palliative Care Research Center showed that 63% of US hospitals with at least 50 beds now employ a palliative care team, an increase of 138.3% in the past decade.
The report said the number of hospitals with a palliative care team increased from 658 (24.5%) in 2000 to 1,568 in 2009. The percentage of hospitals with a palliative care program increased each year.
Overall, 951 hospitals with a cancer center also reported having a palliative care program. The largest hospitals were most likely to have a palliative care program; 85% of hospitals with at least 300 beds reported having a program. That number drops to 54% for hospitals with 50 to 299 beds and 22%for institutions with fewer than 50 beds.
Slightly more that half (51%) of hospitals in the South were likely to have a palliative care program. Almost all medical schools and teaching hospitals have palliative care programs, and those schools and hospitals are concentrated in the Northeast. Additionally, most quality of life research is being conducted in the Northeast.
A national survey conducted by the firm Public Opinion Strategies in May, 2011, asked respondents about their opinions on palliative care, which was defined as specialized medical care for people with serious illness. The results showed that 95% said patients with serious illness and their families should be educated about palliative care; 92% of respondents said palliative care services be made available at all hospitals for patients with serious illness and their families.
Only 30% of the public was knowledgeable about palliative care, according to the survey. Most likely, less than 15% was truly knowledgeable about palliative care. Meier said, adding that she saw that as a good thing because it is much harder to change misconception than to create a perception.
As palliative care shifts from care of the dying to a broader focus on an integrated model where treatment is directed to any patient with a life-threatening illness, nurses working in this area will need to become familiar with common pain syndromes seen in those surviving their illness. In particular, pain syndromes in persons surviving cancer are being seen with greater frequency in the clinical setting. These include persistent pain due to surgery, chemotherapy, radiotherapy, stem cell transplant and hormonal therapy. To illustrate the complex array of complications that can occur as a result of cancer treatment, a case is presented that describes the course experienced by one patient many years after therapy, as well as the management provided by the palliative care and hospice teams. As palliative care moves from care of the dying to focus on any patient with life-threatening illness, nurses working in this area will need to become familiar with common pain syndromes seen in those surviving their illness. In particular, the prevalence of cancer is increasingly globally, with approximately 17 million new cases projected for 2020. As antitumor therapies become more effective, with greater survival rates as a result, the prevalence of persistent pain syndromes is also increasing. These syndromes can be due to surgery, chemotherapy, radiotherapy, stem cell transplant and hormonal therapies. Palliative care and hospice teams will be asked to provide care for these patients and their families in greater numbers, requiring awareness of these syndromes along with management techniques that may vary in focus from care of the actively dying. To illustrate the complex array of complications that can occur as a result of cancer treatment, a case is presented that describes the course experienced by one patient many years after therapy, as well as the management provided by the palliative care and hospice teams. More extensive discussion of these painful syndromes follows. Specifics regarding the treatment of cancer pain and beyond the scope of this article and can be found in detail in other publications.
Deal with Dignity:
When faced with mortality, we all react in different ways. Most people hope for a “good death”, however they may define it. It is important for a person to express preferences about health care and the end of life. This can be done through the use of formal legal documents which grant a durable power of attorney for health care to someone you trust to make decisions for you should you become unable to do so yourself. These directives, which may be called living wills or advance directives, must be tailored to your specific situation and location, as laws vary around the world. These directives may cover any issue you consider important. A very common concern revolves around tube feeding and related issues in palliative nutrition and hydration at the very end, including difficult decisions about withdrawing life-sustaining treatment.
Palliative care, also called comfort care, is primarily directed at providing relief to a terminally-ill person through symptom management and pain management. The goal is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. Well-rounded palliative care programs also address mental health and spiritual needs. The focus is not on death, but on compassionate specialized care for the living. Palliative care is well-suited to an interdisciplinary team model that provides support for the whole person and those who are sharing the person’s journey in love. Palliative care may be delivered in hospice and home care settings or in hospitals. Because medical needs vary depending on the disease that is leading toward death, specialized palliative care programs exist for common conditions such as cancer and AIDS. Specialized caregiving is also needed if organic changes in the brain lead to coma or dementia. To get palliative care you must ask your doctor for a referral.
To find which hospitals in your area that have palliative care click on this link: http://www.getpalliativecare.org/providers