Ask The Doc – Palliative Care and Hospice Questions Answered by Physicians
Patient and family questions answered directly by physicians.
Isn’t Hospice just giving up?
Hospice care is NOT giving up. Hospice care, is thinking outside of the box, using medications and techniques off label to provide support and symptom control to patients who otherwise are not responding to traditional medical therapy. Hospice gives clinicians the freedom to try medications and interventions which would not be normally available to most patients. The reason for this the essence of Hospice Care.
Hospice care changes focus from quantity of days to quality of days. As clinicians when my focus is on improving quality of life, it allows me to think out side of the box to allow for better management of patient’s symptoms and control. We can provide more in terms of medications to control symptoms that traditional clinicians are unable or unwilling to do due to the fundamental change in mindset of care.
In addition to this, hospice allows the additional team members to get involved: Nurses, Social Workers, Counselors, Volunteers, Nurse Aides, Office Staff as well as the Physician to focus on reducing suffering and improving quality of life. When you have numerous sets of eyes watching the patient with primary focus of symptom control, which includes regularly scheduled meetings discussing the patient; the patient just does better. Their symptoms are better controlled, they are getting psychosocial and spiritual support, having regular nursing assessments, regular skin checks by nurse aides, medication adjustments by NPs and Physicians to treat new conditions that may come up (new symptoms, infections, etc.) which leads to overall better medical care for patients.
Isn’t hospice to help people die?
Hospice care is designed to help terminal patients enjoy and live life to the fullest for the time God has given to them. As clinicians, we do NOT help patients die faster or hasten death. This is ILLEGAL in Texas, and ethically not something I can do. While in other states, this may be a legal practice, my personal beliefs prevent me to assist in any form of activity that will purposefully hasten death. It is not something I can do nor will every do.
With this said, we do use medications to help alleviate suffering, help with pain and shortness of breath with SOLE intention to help the patient feel better. It is NEVER given to hasten the process. We do help patients who are dying by being with them, making sure they are not alone, making sure they are comfortable, by making sure their needs are taken care of, by making sure they have the equipment they need, the medications they need, the services they need. We are experts in what options are available to patients and families and we do what we can to make sure patients have all they need to be comfortable and be well taken care of.
I have never been able to get my symptoms, especially my pain under control. How can you help me when other doctors haven’t been able to?
This is a tough question. While I can’t promise that I will be successful 100% of the time, I can promise that if you are not comfortable, I will keep trying different things until we get you comfortable. This may take some time and a lot of trial and error if you have tough symptoms but I have been able to get there for 99.9% of my patients. I can only think of one patient off the top of my head in the thousands of patients I have taken care of who we had a terrible time controlling his symptoms. We did eventually get him there, but it took a lot of adjustments.
Being a specialist in Palliative and Supportive Care has allowed me to help manage some of the sickest patients in our healthcare system. We have many options that most physicians are unwilling or unable to do because of our unique position of having the patient on hospice and focus on quality of life. We also don’t have a cap on the amount of medications we can use to get our patients feeling comfortable, which sets us apart from a lot of others.
My grandmother has dementia. We are going to the doctor to get evaluated. Any advice?
Thank you for reaching out. The answer depends on a lot of things, but mostly depends on how functional she is. If she is still in clear state of mind with just mild cognitive impairment, she can likely continue to function on her own with added assistance with family. She will likely need more frequent checkins from family.
If she is more advanced (moderate to severe) – this is usually the time when nonmedical individuals first notice changes, she may need more assistance. She may need to move in with someone or someone move win with her, Assisted Living facilities or Group Homes. Usually at this stage a nursing home is not required.
A good way to decide is if she is safe at home. Does she forget to turn off stove, will she know to get out if there is a fire, if she falls, can she get back up, etc.
Look at activities of daily living. 6 Major ones are Transferring, Walking, Incontinence, Bathing/Showering, Dressing and Feeding Self. The more help she needs with these (>2, the more likely she needs to be in a facility or living with someone).
With regards to Dementia, it depends on how far advanced she is on the FAST scale. You can google this. Our website also has a good page on this information. https://www.llhtx.com/assessment-of-alzheimers-dementia-fast-scale/
Bottom line, functional status and cognitive status will determine what next steps are needed. If you have not done so, connect with an elder attorney and get things in order. There are local social service organizations (available through county or state organizations) which can help guide you to best next steps.
Will be keeping you and your grandmother in our thoughts and prayers.
How does a doctor know how long I have?
Thank you for submitting this. This again is a tough question. The honest and simple answer is we don’t. There is no crystal ball that allows me to know what is going to happen with any patient with 100% certainty. This power lies only with God. So why do we talk about numbers and time frames? To allow patients and families to try to grasp the true nature of death and give a “guesstimate” on how long we think a patient may have based on medical criteria so the patient and family can prepare and get affairs in order. I always pray for a long life and would never wish patients to pass early. But studies often show that physicians often overestimate prognosis and time frames.
To get to the nature of your question, it depends on several medical factors. The nature of the terminal disease (cancer vs. injury/infection vs. systemic body shut down vs. old age and senility). They all behave differently and some are slower and some are faster in how they shut the body down. When I take a look at a patient, I look at the terminal diagnosis, and confirm that it is indeed terminal. If the diagnosis is confirmed, then I look at functional capacity of the patient (how active are they) and how much nutritional intake they are able to take in. Labwork and organ dysfunction are also important especially if you are looking at a patient suffering a very quick decline (days to weeks).
If decline is slower (several months or longer), usually the case for most of our chronic illnesses, the activity of the patient (how much they are able to do for themselves) and how much they are eating really helps predict the prognosis. Taken another way, the more a person does for himself/herself (Activities of Daily Living [ADLs] – Transferring, Ambulation, Continence (bowel and bladder), Bathing/Showering, Dressing and Feeding him/herself) and the more a person eats (it’s about calories at this stage) determines how long a patient lives. Most patients who are entering terminal decline start eating less and less and start needing more and more help with activities of daily living. This is your biggest red flag that there is something brewing, and if not fixable may be the beginnings of a terminal decline.
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If you are asking a prognosis question, information about how much your loved one is eating, how active they are (how much help do they need with walking, transferring, going to the bathroom, showering, eating, dressing, etc.) will help the doctor better understand your situation.