Who Needs Palliative Care?
If you have been diagnosed with a terminal illness, you may initially decide to pursue treatment thinking that perhaps there is some cure out there for you. Your medical team will support you with treatment and see how things progress. This in hopes for the best outcomes with the goal of helping you live your best life until the end.
One question that the team struggles with often is determining when is the appropriate time to talk to you and your family about transitioning from curative treatment to palliative care. Most often they wait until the curative treatment is no longer working. When that happens you often have only days or hours to live.
A better metric to begin this discussion is the point at which you would not be surprised if your death occurred within the next 12 months. If this is the case then Palliative Care might be the best option depending on how you see your situation and what goals you have. Some research shows that those patients who choose Palliative Care early on, tend to live longer than those that decline this service.
How to Have a Productive Conversation about Palliative Care
How should doctors have this conversation with you without scaring you to death? In the collective years we’ve been in end of life care and in working with past University of Washington’s Medical Doctor and teacher, Dr. Stu Farber, below are some questions the medical team might have with you.
First, they will established a relationship with you if they haven’t already. This can take many forms, but they will do so by asking you your name and how you want to be addressed, introducing themselves and letting you know how you can address them. They will also explain what kind of doctor they are and what they know how to do best. It’s also important for them to know and/or meet your family or friends that will be supporting you through this process.
What is your understanding of your situation? They want to know what other doctors have told you, what you think is wrong, and get a sense of what you and your family are facing.
What is important to you right now? About a third of all people facing death spend their entire life savings on treatments they may not want. On the other hand, many people will do everything possible in order to be around as long as possible for their families. It’s important to know where you are at this moment.
What is your past experience in dealing with someone with a serious illness? Your past experience(s) sheds a light on how you may face your own situation and the best way the medical team can support you.
Who are your social supports? This may be family and/or friends. They should be included in the ongoing conversations with your medical team and Palliative Care Team so everyone is on the same page, aware of the plan and how best you want and need support..
What are your goals for care? The team wants to identify your greatest hopes, fears, and what is important for you to do with the time you have left. They want to know what good medical care is for you, what kind of care makes sense for you, if you are currently receiving treatment that is causing you problems and if you want to change treatment In order to get a good picture about this, it is helpful for the team to know what your goals and values are. You are the expert when it comes to yourself. They need to know that information in order to determine what options might be best to suggest to you.
What else do you want the team to know about who you are and what you believe? This helps the team support your values and beliefs so they can hold your wishes at the front.
This kind of meeting will occur many times along the trajectory of your illness and especially at points where your condition is changing to ensure that you receive the kind of care you want and do not want to receive.
Patients who choose Palliative Care early on, tend to live longer than those that decline this service.
Palliative Care, is a different pathway to support the journey of the living to the end. It is not for everyone, but it can provide what is missing so you can focus on the quality of life that suits you best.
Characteristics of Palliative Care:
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Hope for the best but prepare for all possibilities
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Accepts death as one of many possible outcomes, but not the only outcome
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Focus is on helping patients and families live their best life possible within the difficult context of advanced, incurable illness.
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Integrates mind, body and spirit among the unit of care which is the patient and their family.
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Emphasize control of distressful symptoms especially pain as a goal unto itself. They do not need to know the cause of pain in order to treat it.
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Accomplish this through a team approach consisting of the doctor, nurse, social worker and spiritual care.
How would you like it to be for you? Gentle Passage Doula Collective can help you have this meeting with a Palliative Care Team as well as prepare your family for these conversations. Reach out to us today to start your path for support.
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