For those patients battling terminal cancer and illness, end of life care is often a top priority discussion involving plans, wants, desires, and funeral arrangements. Intimacy and sexuality are often left out of the conversations as they are deemed “extras” by many medical professionals and patients alike. The overall human need for connectedness, touch, and intimacy do not decline however, and in many cases, the need increases. Many patients have reported suffering from lack of these things in the last weeks of their lives and wished they would have spoken up before it was too late. The assumption that patients and their partners are not concerned about sexual issues is a falsity and borne solely from the view on intimacy and sexuality in our world.
Communication on Intimacy when Terminally Ill
Communication about intimacy and sexuality may be challenging for some patients depending on their medical care provider’s outlook on the topic. Many providers do not address intimacy issues before, during, or after their patient’s medical journey has begun. This can make it challenging for the patient to know when to address this matter or make them feel as if they should avoid it all together. This topic can be the most difficult for those patients and partners who are facing their last weeks or months in a hospital, or public hospice setting.
For those patients who can live out their final days in their own home, they may have a better chance and more options to approach the subject with their partner or caregiver, but for those situations where the patient has been moved to a more central and easy-to-access location. When this happens, it can be more challenging to show any real sexuality or intimacy with their partner, or themselves for fear of being watched or seen during the act.
There may also be steady traffic in and out of the house with nurses, caregivers, and family or friends which can impact the times when intimacy could be happening. Those in-home health aids may never discuss intimacy, as many medical professionals are not taught of the various methods of intimacy that are not solely physical. Some of the more forgotten types of intimacy are:
- Emotional intimacy
- Environmental intimacy
- Creative intimacy
- Communicative intimacy
- Aesthetic intimacy
When no forms of intimacy are acted upon or discussed, this sends a clear message that these needs or desires are not as important as mere survival, or comfort. The fact is, the opposite is true- intimacy is needed in our lives as humans until our last dying breath.
Sexual Dysfunction and Issues at the End of Life
There are many factors of illness, cancer, and the ending of one’s life that can hinder the patient’s ability to have “normal” intimacy or sexual relations. Some of these things are:
- Side effects from heavy medications and treatment that alter sexual function and cause a series of issues like nausea, pain, swelling or edema, scarring of tissues, and extreme malaise or fatigue.
- Psychological or psychosocial issues that have changed the way the patient sees their role in the family, the changes happening to their body, mental instabilities like depression or anxiety, and their overall self-image.
- Fear of pain or causing more damage to their own fragile body or worry of how their partner will see them now with their weakening body.
Another common issue is that the patient’s partner is too afraid to inflict more pain or body damage by participating in the act of intercourse or other sexual activities. This can cause a rift or disconnect from each other furthering the end-of-life divide.
Changing needs of Couples facing End of Life Decisions
The needs of the couple will change as they progress through the stages of terminal illness and hospice care and face the end of life. Many may find that the final stage of illness alters the emotional connection to their loved one, and showing endless care and love becomes an important part of sexual expressions. Verbal communication and intimacy acts that are not sexual also deepen the connection.
Many partners acting as caregivers have noted that it is hard to be intimate physically with their patient-partners because of the levels of exhaustion that have impacted their daily lives. Others report that in the final weeks of their partners’ lives, they found themselves becoming more distant, touching, and interacting with them less. That can be harmful to both people, the patient, and the caregiver-partner, which could cause regret and sadness after the patient has passed on.
Acknowledging Intimacy needs
Couples should have open discussions to cover permissions and needs regarding intimacy and sexuality in a hospice or home setting for their end-of-life care. They may also need to schedule a meeting time with their medical care team to ensure that they can still have private, intimate time with each other.
Privacy issues should be dealt with upon entering a hospice or hospital facility and laid out in simple terms and posted or spoken to all to understand. This encourages facilities to allow “closed door” times when your privacy will be automatically respected, and staff will keep their distance. This may mean a sign on the door, much like a hotel room, will be needed.
In some facilities, the caregiver-partner may need permission to lie down with the patient in bed, while in other facilities this action will be readily accepted and encouraged. Gentle intimate activities like stroking, massaging, hand holding, kissing, or cuddling are always safe for any patient. These activities have also be shown to help reduce pain, increase relaxation, and provide an overall calm to the anxiety-filled patient.
In many situations, partners are also asked to help with the care of the patient- even if in a facility. This means they may be asked to help bathe, apply lotions and creams, gently brush their hair, or help them to shave their legs.
Sexual Intercourse at the End of Life
For some, continuing with their regular sexual activity is especially important. Medical staff and doctors can help create strategies for those patients who are struggling due to physical or emotional barriers but are still eager to make love to their partner. Allowing them to think through their wants and full acknowledge their state will help to determine if this is still possible. Encouraging the patient and their partner to have open discussions and communicate about their needs can help to make this easier.
Some specific strategies that can be helpful are:
- Timing pain medications more appropriately to match when their intimate acts may occur to help lessen their pain burden and enjoy the moment. Narcotics can lessen arousal, so this should be thought of before taking.
- Using an inhaler (or bronchodilator) before any intimate activity could be helpful for those patients who are often short of breath. Adding extra pillows or a wedge positioner will also help the patient to stay upright and have better control of their breathing.
- Incontinence issues and catheters can lessen arousal for many and get in the way during intimate times. In some situations, draining the bladder and removing the catheter temporarily may be possible. Discuss this with your medical team before attempting.
- Utilizing alternative positioning during intercourse can help to offset pains or attached wires and machinery.
- Using lubrication to ensure that the patient’s dry tissues are not damaged during sexual acts can help to prevent infections and further issues.
- If intercourse cannot be achieved, consider dual masturbation. For males, there are masturbation sleeves that are simple to use that work with or without an erection. For females, there are stimulation devices or vibrating dilators that can be gentle inserted or used on the outer genitalia for pleasure.
- Scheduling intimate time around the times of the day when the patient feels the most energetic can also help to make this time more special and pleasurable. This may mean that your intimate time happens at eleven o’clock at night, or three in the morning.
There is no right or wrong way to continue with intimacy, intimate acts, or sexuality during the terminal illness battle through the end of life. The patient’s needs should always come first, along with the partner, and whatever is right for the pair. For most couples, looming death brings them much closer together and selfless expressions are done more than they ever had been through the relationship. Always remember that humans were designed to need and crave intimacy in a variety of forms, and by ensuring that your patient is receiving intimacy, will ensure that their last moments on earth are good, wholesome, and full of love.
Citations:
Centers for Disease Control and Prevention
National Institute of Health and Human Services
Hospice Care