Treating Homecare Patients at the End of Life
An Interview with Winnie Suen, M.D.
| Dr. Winnie Suen is a Geriatrician and the Director of the Pain and Palliative Care Service at the Cambridge Health Alliance in Cambridge, MA. Prior to that, she was a geriatrics fellow at Boston Medical Center and a palliative care fellow at Massachusetts General Hospital / Dana-Farber Cancer Institute. |
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Questions
1: What have your experiences been treating patients at the end of life in the homecare setting?
 2: What are some other challenges you face when you bring healthcare into the home?
3: When patients are receiving palliative care at home, is it being provided by a palliative care specialist or a Primary Care Physician?
4: In your opinion, what is the most important thing for clinicians to know about managing pain at the end of life in the home care setting?
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-------------------------------------------------------------------------------------------------------------------------- Beth Cooney:
What have your experiences been treating patients at the end of life in the homecare setting? Winnie Suen, M.D.: It’s been tricky at times. One of the biggest challenges is finding creative ways to give patients their medicines for comfort as they become more ill and can’t swallow pills. Most of the time, for pain, I start by giving liquid morphine or liquid oxycodone. But if they are unable to take that or it’s ineffective, we have to get creative with working intravenous or subcutaneous administration in the homecare setting. There are also rectal preparations of medicines. The hard part can be finding pharmacies that have it. 
BC: What are some other challenges you face when you bring healthcare into the home? WS: In the home, I’m not in the same controlled setting that I’m used to, as in a health care facility. I am a guest in someone’s home. Every home is different in how it is arranged, what is available, what the needs of the patient and family are, and how the care is being provided. Also, the bulk of the care is done by the family or caretaker. A nurse comes in about 1-2 hours per day, at the most. It really requires the care team to educate family members about symptoms, how to evaluate them, and then how to treat them. It is also important to be able to provide enough support for the family so that they can handle the rigors of caring for their loved one.
Working with the families of the patients can also be challenging because of family members’ beliefs and preconceptions about symptom management treatments. Sometimes families don’t want their loved-ones to receive opioid pain medications. They are afraid they’ll make them even worse or that giving too much could kill them. Some people swear off opioids, even though it’s unwarranted. They may have been prescribed opioids before, but at too high a dose, and subsequently had side effects that caused them to become afraid of opioids. I’ve had to start patients, especially my elderly ones, on very tiny doses, for example, 1 mg of liquid morphine. Starting at a very low dose might give the patient and family a chance to show them how it could help with little unwanted side effects. Then they might become more comfortable with the general idea of pain medicines.
Having a working relationship with the patient’s family members is important. I must try to first find out from them why they are worried about using the medication, address their concerns, and educate them as to how the opioid medication can be an important part of keeping their loved one comfortable. I have to work on understanding their concerns to avoid alienating or creating an adversarial role with them. They are the ones directly caring for their loved one and can impact on their comfort level. I have had many family members who were extremely dedicated and have taken wonderful care of their loved ones.
BC: When patients are receiving palliative care at home, is it being provided by a palliative care specialist or a Primary Care Physician? WS: Normally, it’s a primary care physician that sees patients till the end of life. However, if a PCP feels that more support is needed, such as more frequent patient checks, then it’s important to get a palliative care team or hospice involved. Hospices have more interdisciplinary support, such as social workers, chaplains, home health aides, nurses, bereavement counselors, and volunteers. Caring for someone at the end of life should be done with a team approach because there can be many patient and family needs. These needs can be from a physical, social, and/or psychological standpoint and the different team members can help to respond to different concerns.
BC: In your opinion, what is the most important thing for clinicians to know about managing pain at the end of life in the home care setting? WS: It’s important to educate the families to ensure that their loved-one’s pain is properly managed. No one needs to die in pain if they don’t want to. One may have to be creative in how medicines are given, such as changing the route of administration to IVs, subcutaneous injections, or the Fentanyl patch, instead of pills. Sometimes, combining the use of different integrative techniques, such as meditation, massage, acupuncture can also be helpful. In the end, we can be successful in treating symptoms at the end of life. Since we have the means to treat pain, we should use them. No one needs to die in pain.
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