Thursday, May 28, 2009
Monday, May 25, 2009
Here’s the scenario: mom is clearly at the end of her life. She has been brought into the emergency room for care. She has no advance directives and is unable to speak for herself. There exist two choices for mom’s care – the Intensive Care Unit for aggressive management, possibly with ventilator support, or palliative care with the focus on comfort care.
There are numerous children, family and friends involved with mom and they are getting input from every source. Someone knows someone who has the same disease process as mom and they had a round of chemo and are cured of stage IV metastatic disease. Someone knows someone who is a doctor or nurse and they have a host of recommendations to follow not having seen the patient.
The family is confused and at odds over what to do. No one agrees on what mom would want or what they want for mom. Dad is looking at his bride of over 50 years and does not want to entertain the idea of losing her but feels she’s had a good life and wouldn’t want aggressive treatment. The son thinks that in not doing anything aggressive is akin to murdering mom. The daughter does not want her to be in pain. Another daughter is hoping for a cure. No one speaks to the daughter who lives out of state but is the most vocal in what she wants done for mom. And then there are doctors who will offer a chance at some curative therapy in the hope and belief that mom may be of that very small percentage of people who at this stage in the disease will have some degree of remission. There are also doctor’s who will not tell the family that their mother is at the end of her life maybe because they can’t let go of trying to be curative or maybe they are just afraid of having the discussion about death and dying with the family. The family is overwhelmed, confused, angry, sad, grieving. They are fighting with nursing staff and each other.
Here’s where we come in, our first step is to recognize we can’t cure the patient’s disease or the dysfunction of the family. We set up a family meeting to help provide the family with all the information they need to make a decision regarding the goals of care for mom and to help them focus on quality of life. Most times we are able to help the family get on the same page. And sometimes we are not able to do so. We have yet to come across the perfect family. Every family we come across has some degree of dysfunction.
Sometimes the family has members who are in such denial or have such a strong fear of losing their loved one they will continue futile care and continue artificial means to keep their loved one alive – even at the cost of quality of life. Often, the unreasonable family members, the angry family members remain as they have always been prior to mom’s illness – unreasonable and angry and they frequently stand in the way of family decisions regarding care.
The lesson here is to make sure that you clearly speak to your family about what you want should you be unable to speak for yourself. Appoint a health care proxy who you know will follow your wishes and will focus the care you receive on the quality and comfort level you would want should you not be able to speak for yourself.
Friday, May 22, 2009
- "Hi we're from Palliative Care... and we're sorry" This is unfortunately not as funny as it would seem. Often our team is called in when situations are out of control, either from the dire emotional stress of the illness or the perceptions of neglect from a stressed family. Nine times out of ten we can remedy this situation, but there are those times we go up in flames.
- "I just want to know that I'm doing this right... " A quote from a woman dying of ovarian cancer. We are all very proud of being in control. I believe that the biggest emotional hurdle we face in our work is the fact that the person faces a betrayal of their sense of identity, but from their own bodies. This woman was a type A control person, who always overachieved, always won, and always did everything right. In the end, her greatest concern was that she was "doing her dying" right.
- "No one gets off this planet alive" Reality check for those times when families and/or physicians get the idea that our tragically ill relative will pull through the 50 or so illnesses that they are battling.
- "No CPR Doc, when this tire goes flat... throw it in the dump!" New York truck driver with end stage colon cancer reaction on being approached for Advanced Directives. He obviously adamantly refused the offer of death-extending CPR.
- "You think better sitting on your ass than laying on your back" Same truck driver when asked whether he wanted to have the family meeting while sitting in a chair or laying in a bed. This is truly a multi-situation piece of wisdom when you stop to think about it.
Sunday, May 17, 2009
Thursday, May 14, 2009
Wednesday, May 13, 2009
What is Palliative Care?
Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness.
Palliative care is not dependent on prognosis and can be delivered at the same time as treatment that is meant to cure you. The goal is to relieve suffering and provide the best possible quality of life for patients and families.
Ensures quality of life
Palliative care is not a one-size-fits-all approach. Patients have a range of diseases and respond differently to treatment options. A key benefit of palliative care is that it customizes treatment to meet the individual needs of each patient.
Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps patients gain the strength to carry on with daily life. It improves their ability to tolerate medical treatments. And it helps them better understand their choices for care. Overall, palliative care offers patients the best possible quality of life during their illness.
Palliative care benefits both patients and their families. Along with symptom management, communication and support for the family are the main goals. The team helps patients and families make medical decisions and choose treatments that are in line with their goals.
Different from hospice
Palliative care is NOT the same as hospice care. Palliative care may be provided at any time during a person`s illness, even from the time of diagnosis. And, it may be given at the same time as curative treatment.
Hospice care always provides palliative care. However, it is focused on terminally ill patients-people who no longer seek treatments to cure them and who are expected to live for about six months or less.
Provided by a team
Usually a team of experts, including palliative care doctors, nurses and social workers, provides this type of care. Chaplains, massage therapists, pharmacists, nutritionists and others might also be part of the team. Typically, you get non-hospice palliative care in the hospital through a palliative care program. Working in partnership with your primary doctor, the palliative care team provides:
- Expert treatment of pain and other symptoms
- Close, clear communication
- Help navigating the healthcare system
- Guidance with difficult and complex treatment choices
- Detailed practical information and assistance
- Emotional and spiritual support for you and your family