Almost two weeks ago, I had the opportunity to attend the Quality of Life Forum – Tampa Bay. It was organized by the American Cancer Society’s Cancer Action Network (ACS-CAN) and 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 from early integration of palliative care plans, fertility preservation, and quality of life for adolescents with chronic illness to misconceptions about hospice were to be discussed. Since that day, it has been one presenter’s story of a man’s journey with cancer and the importance of receiving ongoing palliative care that has stayed with me.
For many the mention of death and the process of dying are uncomfortable to hear. The thought that people would volunteer to spend their morning discussing the difference between palliative care and hospice care, never mind when the two should be provided or overlap is not very tantalizing. However, for many of us working in healthcare, these are very important topics that need to be discussed and discussed openly and honestly. 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.
Many of us, when we admit to thinking about our deaths, hope that it will not be too difficult and that we will die at home and in peace. Some do die peacefully in their sleep unaware that their last day had come. However, for many, this will not be the case. For many of us, we will also be faced with a major or chronic illness that may start us on the path towards our death. This path will be different for every single person that embarks on it. That is a key point. Just as we our 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 starting to aggressively attempt 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 to being 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 a viable outcome will vary. People with Alzheimer’s can 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. Yet what will be their quality of life?
Keep in mind that treatment is difficult on many levels for the one receiving them and those caring for them. In addition, both those with Alzheimer’s and those with cancer will have to navigate the medical-healthcare system while they are receiving care. Navigating medical care is a very scary prospect even for those who are healthy. Imagine how it can be for the person and their family when a serious illness is involved. This is where palliative care can and should be provided.
Palliative care (as defined 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.” Some key points here are that services are provided concurrently to curative or life-prolonging care and to optimize quality of life by decreasing suffering. Nowhere does it say that care will be stopped or lessened 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 to decrease suffering. The two don’t have to work in opposition or wait until “everything has been done”. They can complement each other. Providing palliative care in conjunction with curative care has been reported to improve quality of life, increase life span and reduce cost of care because the treatments provided more closely match 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 still most followed) palliative care model is seen on the top. This old model focuses on providing curative/ aggressive medical interventions until it is determined by the physician that “nothing further can be done” in attempts to cure the patient. Typically at this time the patient is either told to think about hospice services or maybe is provided some interventions to make them comfortable until their death occurs. Worse yet, the patient’s wishes being unknown or not honored, s/he continues to receive aggressive or non-needed services such as unnecessary medications, hospital admissions for infections, surgeries, etc. All of these actions work together to lower quality of life and quality of death. Furthermore, if hospice care is provided it typically is provided only within days to several weeks of the person dying. Therefore the full support and benefits of hospice are not implemented.
The bottom model is the model focused on in this post and throughout the attended ASC-CAN “Quality of Life” Forum. This demonstrates the concept of providing life-prolonging care in unison with the many facets of palliative care. This model of care is provided until it is agreed that the illness has progressed to a state that hospice care is better suited for the optimum care of the patient. You will notice that the period of hospice care provision is longer in the new palliative care model. This is due to the patient’s wishes and preferences of care being known and followed. If it has been determined that aggressive/curative measures are no longer beneficial or will negatively impact the quality of life for the patient then hospice services can be initiated. The majority of speakers participating in the ACS-CAN 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 even more care/services that is targeted to keeping the patient as comfortable as possible and as well cared for as possible in guidance to their known wishes and preferences.
One of the main areas targeted for care whether palliative or hospice is pain. Pretty much every speaker that day at the ACS-CAN Forum touched upon effective pain management as a means to improve quality of life. But pain comes in many forms.
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 experiencing a serious illness has to encounter. The physical pain experienced as a result of a tumor impinging on a body part, causing nerve damage, etc. can also be influenced by these other types of pain. These psycho-social areas of pain are also dealt with on 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; they will all also be very individualized.
Diane Portman, MD from Moffitt Cancer Center presented to the audience at the Forum on how Moffitt is working to provide palliative supportive care to oncology patients. She discussed the focus on attending to these four areas of pain by a multidisciplinary team to improve a patient’s quality of life and experience of care in their organization. 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 and gone on to become an experienced pilot. He was also highly active in his Christian faith. Gar and his family requested palliative care services in conjunction with his aggressive medical care. He wanted to fight his diagnosis so that he could be with his family and baby son as long as he was able. His goal was aggressive treatment but still have as active a life as possible. The team continually assessed these areas of pain in conjunction to Gar’s known treatment preferences. His family has reported that the attention to all of his areas of pain, his wishes and knowing what his goals were helped Gar to live a quality existence up until his death. They feel that this worked together so that Gar was able to live to see his son reach his seventh birthday.
Gar’s journey wasn’t year to year battles with his cancer. There were periods of the disease being in remission or not requiring aggressive care. But by electing to have palliative care ongoing with his curative care, Gar was 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. However, they could discuss what Gar wanted when he felt good and for when/if the disease progressed to meaning death. As a result, 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.