Almost two weeks ago, I attended the Quality of Life Forum–Tampa Bay. The American Cancer Society’s Cancer Action Network (ACS-CAN) organized the event, and it took place at Moffitt Cancer Center in Tampa, Florida. The 3-hour session was to showcase nine speakers, including Congresswoman Kathy Castor (Democrat, US House Representative, Florida Congressional District 14). A range of topics included early integration of palliative care plans, fertility preservation, quality of life for adolescents with chronic illness and misconceptions about hospice were to be discussed. Since that day, it has been one presenter’s story that has remained with me. The story of a man’s journey with cancer and the importance of receiving ongoing palliative care.
Death and the process of dying are topics that are uncomfortable to discuss. That people would volunteer to spend their morning discussing the difference between palliative care and hospice care, never mind when to provide one or to overlap, is not very tantalizing. However, for many of us working in healthcare, these are very important topics that need to be discussed with openness and honesty. As the saying goes, there is only one thing guaranteed after being born – dying. Some used to include paying taxes, but we’ve all seen some avoid this. Death doesn’t allow loopholes. We will all, at some point, die. There I said it.
When we admit to thinking about our death, many hope that it will be easy and that we die in peace at home. Some die in their sleep, unaware that their last day had come. This won’t be the case for everyone. For many of us, we will also face a major or chronic illness that starts us on the path towards our death. This path will be different for every single person who embarks on it. That is a key point. We are individuals in life. We are individuals in how an illness will behave in us and how we will die from it. Healthcare in the United States is just attempting to implement individualized/person-centered care. Just as we want our curative (aggressive) medical care to be individualized and person-centered, so should our care be for those fighting a serious illness that may lead to or is about to result in their death.
Not all serious illnesses will lead one on a direct path to their death. Cancer and Alzheimer’s disease are two diagnoses that come to mind. Both diagnoses denote very serious illnesses. However, depending on a multitude of factors, the length of the illness before death becomes the outcome will vary. People with Alzheimer’s may live many years after diagnosis. People with cancer can elect to have surgeries, undergo treatments, etc. that may prolong their lives for years. They may not even die of the cancer originally diagnosed. What is their quality of life?
Treatment is difficult for both the one receiving it and those caring for them. Alzheimer’s and cancer patients have to navigate the medical-healthcare system while receiving care. Navigating medical care is a scary prospect for the healthy. Imagine how it can be for the person and their family when a serious illness is involved. This is where palliative care can enter.
Palliative care (as explained by the National Hospice and Palliative Care Organization on their website: http://www.nhpco.org/palliative-care-0) is
“patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice… Services are available concurrently with or independent of curative or life-prolonging care.”
Two key points here are that provided services can exist concurrently to curative or life-prolonging care, and to optimize quality of life by decreasing suffering. Nowhere does it say that medical care will cease or diluted in some sense. This is a misnomer in our society’s understanding of palliative care. Palliative care provides the space for the curative to aggressive medical interventions to continue while attending to the other needs; the psychosocial that individuals require when targeting decreased suffering. The two don’t need to work in opposition or wait until “everything has been done”. They can complement each other. Providing palliative care with curative care has showed the ability to improve quality of life, increase life span, and reduce cost of care because the provided treatments better matched the patient’s goals and needs. (National Cancer Institute; Center to Advance Palliative Care; American Cancer Society Cancer Action Network)
Below is a well-known image Diane Meier, MD first used to compare Old and New Palliative Care Models.
The old and most followed model figure is on top. This old model focuses on providing curative/ aggressive medical interventions until the physician determines that “nothing further can be done” to cure the patient. Sometimes the patient is told to think about hospice services or to get some help to make them comfortable until their death occurs. Worse yet, the patient with wishes, being unknown or not honored, continues to receive aggressive or non-needed services such as unnecessary medications, hospital admissions for infections, surgeries, etc. These actions work together to lower quality of life and quality of death. Furthermore, if provided hospice care, it occurs within days to several weeks of the person dying. Therefore, the full support and benefits of hospice negated.
The bottom figure shows the model focused on in this post and throughout the forum. This shows the concept of providing life-prolonging care in unison with the many facets of palliative care. This model of care continues until all involved agree that the illness has progressed to a state that hospice care becomes the optimum care of the patient. You notice that the period of hospice care provision is longer in the new palliative care model. The patient has their wishes and preferences known and followed. Determination that aggressive-curative measures are no longer beneficial or will negatively impact the quality of life for the patient then hospice services can start. Most speakers taking part in the Forum kept noting the following point, “just because a doctor declares that ‘nothing further can be done’ doesn’t mean that nothing can be done regarding the care of that individual as they now prepare to die.” Hospice care isn’t lack of care or lack of quality care. It can mean the provision of more care and services that target keeping the patient as comfortable as possible, as well cared for as possible in guidance from their known wishes and preferences.
A main area targeted for care, whether palliative or hospice, is pain. Many speakers at the ACS-CAN Forum touched upon effective pain management to improve quality of life. Yet pain comes in many forms.
(Image: http://www.open.edu)
This table helps explain the concept of “Total Pain Control”. Dame Cicely Saunders, the founder of the modern hospice movement, has written extensively about treating not just the physical pain but the other types of pain a person with a serious illness has to encounter. The physical pain experienced because of a tumor impinging on a body part, causing nerve damage, etc. can also include the other pains. These psycho-social-spiritual areas of pain require attention of their own. Issues such as depression, concerns about finances, and questions of faith can all impact the level and types of pain a patient is experiencing.
Diane Portman, MD from Moffitt Cancer Center, presented at the Forum on how Moffitt is working to provide palliative-supportive care to oncology patients. She discussed the focus on attending to the four areas of pain by a multidisciplinary team to improve a patient’s quality of life and experience of care at their center. She spoke of a young man named Gar and his experience after being diagnosed with cancer. Gar was a former professional musician who had switched careers to become an experienced pilot. He was devout in his Christian faith. Gar and his family requested palliative care services with his aggressive medical care. He wanted to fight his diagnosis. He would be with his family and infant son as long as possible. His goal was aggressive treatment but still to have as active a life as possible. The team continually assessed these areas of pain in conjunction with Gar’s known treatment preferences. His family has reported that the attention to all of his areas of pain, his wishes, and acknowledgement of his goals helped Gar to live a quality existence until his death. As a result, Gar lived to see his son reach his seventh birthday.
Gar’s journey wasn’t a year-in-year-out battle with his cancer. There were periods of the disease being in remission or not requiring aggressive care. By electing to have palliative care ongoing with his curative care, Gar’s care team monitored and regularly asked what his needs and goals were. This resulted in his multidisciplinary team providing various services outside of the oncology-focus over the years he lived with his illness. His assigned team didn’t leave him once his cancer symptoms abated for a period. No one knew when his disease would worsen or predict when it would progress to the stage of his dying. They discussed what Gar wanted when he was well and again when the disease progressed towards death. Gar and his family enjoyed the time they had to the best of their abilities and with the support of his team. He lived well, and he died well.